Pulse by AlphaWire
Welcome to Pulse by AlphaWire, the podcast where science and education meet cutting edge technology and artificial intelligence.
My name is Aldo de Pape and each week I sit down with innovators, thinkers and doers who are working to change our world for the better.
Together, we explore their journeys, uncover the lessons they've learned and take the entrepreneurial pulse that drives them on their path to success.
Pulse by AlphaWire
Transforming Rare Disease Diagnosis with AI and Digital Innovation
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Revolutionizing Rare Disease Awareness and Community Engagement with Rebecca Stewart of Rare Revolution
Explore the inspiring journey of Rebecca Stewart, founder and CEO of Rare Revolution, as she shares how personal experiences with rare diseases sparked a movement to improve awareness, advocacy, and community connectivity. Discover innovative approaches including publishing, storytelling, AI technology, and youth engagement aimed at transforming how rare diseases are perceived and addressed globally.
Main Topics Covered:
- Rebecca Stewart’s personal journey through rare diseases and how it fueled the creation of Rare Revolution
- The challenge of raising awareness for the 7,000+ rare diseases and the importance of collective storytelling
- The role of digital media, social platforms, and AI in improving communication and advocacy
- Rare disease impact statistics: 1 in 2000 Europeans, 17 million in the UK, 350 million worldwide
- The misconception of “rare” and the diversity within rare diseases
- Advocacy efforts by patient groups and the importance of amplifying their voices
- Advances in diagnosis, policy, and drug development, and remaining obstacles
- The global landscape: differences in awareness and challenges across regions
- Ethical considerations of AI, data privacy, and security in rare disease research
- The purpose and future of Rare Revolution’s initiatives: publications, youth programs, expanding global reach
- Personal routines and inspirations for leadership and innovation
Watch this episode on YouTube: https://www.youtube.com/@AlphaWireHQ
This episode was brought together by AlphaWire: https://alphawire.xyz/
Now, people can be connected within their community to people all over the world. Another thing patient groups do really well are patient conferences, and so they will bring together people with a particular condition from often all over the globe to meet together, and that might be somebody's only opportunity to meet someone who has the same condition that they do and might have the same shared experiences. So that is only possible because of the digital age and to some extent social media.
SPEAKER_00Welcome to Pulse by Alpha Wire, the podcast where science and education meet cutting-edge technology and artificial intelligence. My name is AlderPop, and each week I sit down with innovators, thinkers, and doers who are working to change our world for the better. Together we explore their journeys, uncover the lessons they've learned, and take an entrepreneurial pulse that drives them on their path to success. In this episode of Pulse, I sit down with Rebecca Stewart, founder and CEO of Rare Revolution, to explore why rare diseases deserve far more attention than they receive. Although each condition may affect only a small number of people, together rare diseases impact more than 350 million people worldwide. We discussed Rebecca's personal journey into rare disease advocacy, the power of storytelling in building global communities, and how artificial intelligence is beginning to transform research, diagnosis, and patient support. From the challenges of navigating healthcare systems to the opportunities created by emerging technologies, this conversation highlights why collaboration and human connection are essential to improving the lives of those living with rare diseases. I sincerely hope you will enjoy my conversation with Rebecca Stewart of RARE Revolution. Yes, and we are live on a beautiful Thursday morning and absolutely beautiful day in Aberdeen. And I have the great privilege to sit here with my next guest, Rebecca Stewart, founder and CEO of Rare Revolution. A very good morning to you, Rebecca.
SPEAKER_01Good morning, Aldo. Thank you so much for having me. It's such a nice uh pleasure to be here.
SPEAKER_00Yes, we met uh last week. I mean, we had seen each other before and briefly encountered one another, but we had the opportunity to speak a little bit more uh last week, and I was really fascinated by your story, so I invited you immediately to come on the podcast uh because you're the founder of Rare Revolution, which does a great deal of work, and we're gonna dive into that in detail to raise awareness for rare diseases. And I thought it was just such a great thing to do, and we're gonna all talk about what rare diseases are and why uh this awareness is needed. So I thought, well, let's bring Rebecca on. So we met at one biohub, which is like this big building, uh all built for the life sciences, life sciences in the northeast of Scotland. Even though it's always very dynamic and vibrant, I would say that it's also we're a little bit further up north. We're not necessarily Edinburgh or London or kind of those cities. But yet I do feel there's loads uh going on. What are your thoughts there, Rebecca?
SPEAKER_01Yeah, I think you're right, Alda. I think um being a bit further north, people often think of Aberdeen and the surrounding area as the you know the oil and gas area, and so they're not necessarily thinking of life sciences and other technologies. So it's wonderful to have the work of Opportunities Northeast, the one life science hub, right in the heart of uh what is essentially becoming a research triangle. We have um close proximity to the hospital and of course to the universities, so it's a great thing to have, and certainly nice for me, as you rightly said, most of the life science work in Scotland is down in the Central Belt, and actually, even that's a very small part compared to say London, Cambridge, or Europe. So it's nice to have something on our doorstep to be able to connect, and I hope to see that grow in future years.
SPEAKER_00Most definitely. So let's talk about your journey. So Rare Revolution, I love the name by the way. Um take us back to when you started all of this.
SPEAKER_01Sure. So, like a lot of people within the rare disease field, it's a little bit unique in this area in that often personal and lived experience is the catalyst for people starting up organizations, and and the same is very true for us. So I grew up with rare disease. My dad has an ultra-rare condition called chronic inflammatory demyelinating polyneuropathy. We grew up with that before we knew it as it is and it had a name. I guess that as a as a child and a young person teaches you a lot of skills, you know, kind of is very formative when you have a parent who is often unwell and has a level of disability. And then in 2012, my nephew was born, and in 2013, he was diagnosed with a completely different rare condition called xeroderma pigmentosum. And that was again another formative time. I had um two children, was pregnant with my third, and this was my sister's first child. And so I think immediately as a parent, your mind goes to all the ways that that is going to make life very different for your family and for my sister's family. And so one of the first things we did in a bid to kind of think, well, where can we be helpful? Is we set up uh what would then go on to become a charity. It started as a not profit, it was called Teddington Trust, um, which eventually then became a charity. And to start with, my sister wrote was, you know, trying to explain to her very young son uh this condition that was going to be very um impactful on his life. And so she wrote a series of stories that were specifically for children around a character called Little Ted, um, and Ted was um his nickname. And so there was this little Teddy Bear. It was a great way of explaining the condition and some of the things that he might encounter to very young children, and that was really how it started. We also realized that actually this could be super helpful for other parents, and so our first project as a charity was to create what became the Book and Bear Project, and so we have an actual physical Teddy Bear and a series of two books that are sort of, I think there's three or four stories in each of the books, that we gave as a charity to all children 12 and under, made known to us globally. So that was the very first thing we did. And then over the years, as we understood the unmet need for families, um, the projects grew and the scope of the charity widened. It did go through a bit of a rebrand, and so Action for XP was the name that it it eventually became, and it supported patients globally. So that was kind of how we got into the field of rare disease. Um, then how we got into rare revolution more specifically. So in 2016, we were thinking, we kind of finished our families, and one of the things we discovered actually, my sister and I, we had never worked before together before, but having worked together on the charity, we realized actually how much we really enjoyed working together. And we had finished our families and were trying to think, okay, what were we going to go back to the careers we had before? Kind of didn't really feel that they fitted anymore. You know, life had really changed, they really moved on. And so we were looking at what are the challenges that all rare disease charities have or that rare diseases have in general. And essentially what we came up with was the fact that there were so few places where you could really raise awareness for lived experience, caregiver experience, sibling experience in a way that was meaningful to the person telling their story, but also, you know, something that would garner interest, would answer questions, would allow people to be able to really see and understand somebody else's journey and point of view. But also we realized that individually, and we'll we'll kind of come into what is a rare disease shortly, but individually, rare diseases are rare. Collectively, they're not rare. And so there is power in uh projects and communication channels that come out of the individual silos. And so we thought, well, could we do something that provides a platform for rare diseases where they can be talked about in a way that we're comfortable with and happy with, in a way that builds trust, but also that connects everybody? Because that's really important in rare disease. It's an environment where you have patient groups funding science, you have healthcare, you know, we have a lot of clinical research in rare disease. And so, how do we make sure that all of these people know who each other are, know what work is going on to allow collaborations and connections to form? And so what we wanted to do was create a publication where it didn't matter whether you were a member of the public, patient yourself, or a person with lived experience yourself, or healthcare professional, a scientist, or somebody that works within pharma or diagnostics, you could both read the magazine and get value, or you could contribute to the magazine and get value from that too. So that essentially was the premise. That was what we came up with. And so in 2016, that was when we launched the very first edition.
SPEAKER_00Wow, so that's uh that's quite a story. I want to talk about rare diseases and where the name is slightly misleading, and I would say on two levels, because one is I think that the word rare, even though we say rare, because when you think rare, it's like not often, not frequent, not many people, but still hundreds of millions of people worldwide are impacted by rare diseases. So I think that's where there's a little bit of a misnomer. And then I think the other level is when you bring it together under the name rare diseases, this could be very different types of diseases. So it's it's not a one-size-fits-all cure, naturally. It's a very complex buildup of a disease, and and one is completely on the other end than the other is. But by bringing it together under the same name, it kind of makes people think like, and I recall us having a conversation, it's the same with cancer that when people say cancer, that's just one thing, but it isn't. It's just so diverse and has so many names and faces and ways of how it can express itself. But let's dive into the first thing, because even though we say rare, it impacts so many people on the planet. What are your findings?
SPEAKER_01So rare disease is defined in Europe as one in 2000. So there's in the UK and Europe, one in 17 people will have a rare disease in their lifetime. That is 3.5 million people in the UK. Globally, that's over 350 million people. So, like you said, it's not rare to have a rare disease. However, there are around 7,000 different rare diseases, and some of those will be at the very top end of that. Cystic fibrosis, for example, was a condition considered a rare disease. However, its prevalence is probably almost pushing it out of that category at the moment. And then you have other conditions like zeroderma pigmentosum. My nephew's condition has 117 patients in the UK, and a friend of mine, David, his condition, there, I think, I believe there are three people known globally. So you have something from the super ultra rare right through to something that's kind of at the top end of the brackets, if you like, as to what constitutes a rare disease. I think the other thing that people don't always think about or take into account is in the UK alone, 6,000 babies will be born every year with a syndrome that's so rare it's actually undiagnosed. So when you also include the undiagnosed element in that, so there are almost as many people undiagnosed in the world as there are with a named rare disease. So that 350 million people equates to people with a known rare disease. There are another 300 million people who are completely undiagnosed who are still searching for an answer to the condition that they have. And of course, that changes as science progresses. So it it affects a huge population. I think, in terms of the kind of branding, if you like, um, and the challenges with that, on one hand, the challenge doesn't really match up with the scope and the size of the impact on the population. Cancer, if you think of it in PR terms, is a huge success because not all cancers are the same. They can affect very different parts of the body, very different outcomes, very different treatments. But it's much easier for people to get behind a much broader collective, if you like. You know, it's really difficult as something that's ultra-rare to engage hearts and minds and empathy of people for something that affects a few hundred people or less than. And so, in terms of how we talk about these infrequent and not highly populated conditions, we do sort of need something that can help, like cancer, help engage hearts, minds, understanding, empathy. And whilst from a biological point of view, a bit like cancer, you know, each condition can be very, very different. A lot of the challenges experienced by the population are actually very similar. So, for example, access to really experienced healthcare professionals, you know, if you think as a GP or a consultant, you know, you're not necessarily ever going to come across somebody with a rare condition in your whole career. You can't possibly know about them all. So access to really good healthcare and really good knowledge is lacking. Access to social services and social support can be very challenging because, of course, it's not necessarily a tick box and you know, all of our social systems are set up for the many, not for the few. So it can be very difficult accessing a really good diagnosis and then accessing the support that you need to help support you live your best life. Access to the workplace, access to education. So all of these things are actually shared across many, many rare diseases. So I think from that point of view, the benefit of looking at the whole is from a policy level, from a public knowledge and awareness level, it's much easier to talk about it as a collective than it is uh individually. And so one of the things we really wanted to do is in the advocacy space. So for rare disease, one of the things that is done incredibly well is the charitable patient group sector. So the advocacy groups, both within the UK but also globally, do an amazing job of paving over the cracks and picking up all the space that social care, health care, research don't do. And they have to be really focused on their condition or their little umbrella of conditions. So what we can do as a broader organization is make sure that at least we're talking about their work because they're doing it on restricted human resource, restricted budgets, but we can work with them to make sure that all the great work they're doing is out there and people can find them, people can be connected to them.
SPEAKER_00You amplify their voice. Would you say that rare evolution is also doing advocacy?
SPEAKER_01Yeah, it is. Our job is really simple. It's to provide visibility to people whose stories may not be told and give validity to those stories. Because often in the rare disease field, because of the challenges of how much is just unknown, sometimes a person will spend a long time going through the medical system just to get that diagnosis. And often, as part of that, they feel that they're not believed, they feel that they're not taken seriously. On average, it's something like 5.4 years to receive a diagnosis as somebody with a rare disease. I think it's something like seven in ten rare diseases occur in childhood, and eight in ten are genetic. So if you think that for a big portion, even when there's that genetic component and it's a childhood condition, the average is still five years. So if you think about that in the skin, you know, it means that some people are not receiving a diagnosis until they're 20, 30, 40, 50. So it's a lifetime of not being seen, not being taken seriously, and just not having any answers. So for our job, visibility and validity is the two big things that are important to us. Because often when someone shares their story with us, it might be the first time they've ever done it. So there's a real responsibility to do that. So that's the first part of what we do. Connection is the second part, making sure that people are well connected within the ecosystem that exists. And we spend a lot of our time, a lot of our effort, a lot of our energies, a lot of our policies are all really designed to invest in trust. You know, that is what we wanted to do is be a media setting that people could trust.
SPEAKER_00I want to talk about, and I hope you've seen it, but I want to talk about progress. So you said 2012, 2013 is when you started this journey, so that's going on 14 years in a different iteration, but uh, you know, and you mentioned as well that for your father, it took so long to to find a diagnosis, as you said, like you know, that that must have been longer than 5.4 years. Yes. Um would you feel we've progressed and that now a diagnosis can be given quicker, but also as as science progresses and and healthcare and all those things?
SPEAKER_01Yes and no. So yes, I think there has been progression. I think the evolving of the third sector and the and the patient organizations and the advocacy organizations, they have really professionalized, even without the funding, to a level which means that they are now involved in advocating at policy level, they are advocating at a regulatory and a payer level. They're often involved in things like the nice meetings and nice appeals. They are funding and driving research, and some of them are going on to develop biotech companies to develop treatments for their loved ones' conditions because they're so frustrated with the luck. So I think in terms of the advocacy landscape, there's been a huge escalation in what they're doing and and how they're getting involved and what they're driving. The other area I see great progress, albeit it's still very slow, bringing the lived experience voice and the advocacy voice into the drug development pipeline. So patient engagement is a, or public and patient involvement is something that in the rare disease world has really been progressing. And so most pharmaceutical or biotech companies, most research organizations will now look to bring in lived experience as part of any project that they're running. And so that's great to see. Of course, the downside to it is it's an additional burden on the advocacy groups to provide that, and it's a whole new language for them to learn. And often again, we're at a time where the third sector is facing huge challenges in funding and resource. So it cut the positives also come with a bit of a negative. I think on a policy level, we're starting to see some real improvements. So Eurordas and Rare Diseases International, which are two big European umbrella organizations, they've been doing a huge amount of work in policy. And in the UK, we have an organization called Genetic Alliance, which are uh get involved in policy too. So I think we're starting to see that the UK does now have a rare disease framework. What I think is not progressing as well is there's great will, and we've got, you know, as many reports as you could shake a stick at as to what we should be doing. What we're not seeing happen with the same speed is the implementation of these frameworks. So I think what we've got is something that's not quite reaching patient benefit yet. And the same is true of the drug development sector. We're seeing, you know, even within the UK, we've got some changes to the way the MHRA is going to be reviewing rare disease therapies, and we've got a government who are really backing out. vibrant early stage spin-out life science community, what we're still not seeing though is that same enthusiasm for when this great research actually comes to fruition and there is a drug at the end of it, we're then seeing problems with paying for these drugs. So even though these drugs exist and we're seeing more of them start to come to the market, we're having huge problems with reimbursement. And so at one end we have a government really championing a life science community but they don't have the budgets then to pay for the output of all of that great work. So yes I think it's in some points we're seeing huge progress but I think where we're falling down is the actual citizen benefit isn't being seen as much as it could be and what I'd be curious of is like how does this evolve on a global level?
SPEAKER_00So you you just mentioned the European Umbrella Organization, you mentioned the UK then of course we have the United States where I can imagine loads is happening as well. Is there one kind of going harder than the other?
SPEAKER_01How is rare disease awareness, how is that growing in the United States different than here or yeah so I guess uh in terms of the disease awareness I think that is something that Europe and the US does really well. We're starting to see big movement in Australia. They're doing awareness really well there. Where we see room for improvement of course are in countries where we either have low middle income countries or countries where health is stigmatized. So Latin America, Africa, some of the Asian countries where genetic disease is prevalent but because of the stigma that's attached to it, raising awareness is really challenging. So I think there's still a lot of work to be done there. And you know we complain about access to medicines in the UK and in the US but then if you talk about access in somewhere like Malaysia or sub-Saharan Africa of course that looks entirely different again. So I think we're seeing progress everywhere but there different countries will have different challenges. You know for example in Africa and Latin America they have a big problem with misinformation and of course the rise of social media influencers that also equates to health influencers and so that's not always positive. So I think that's something that you know when when they don't have other avenues to get good high quality accessible information people turn to social media and that may not always be helpful. So I think uh the regulating of health information is always really tricky because like anything you don't want to be overly burdensome in terms of regulation but there is a responsibility to be accurate and be helpful. So certainly in for other countries it's doesn't look the same everywhere.
SPEAKER_00I like what you said about social media. I mean I didn't like it. I mean it's it's disturbing but I I do think you raise an interesting point there because it is about distributing information a lot more easier than I think the olden days. So would you also say there are advantages?
SPEAKER_01Huge advantages to the connectivity for communities because now people can be connected within their community to people all over the world. Another thing patient groups do really well are patient conferences and so they will bring together people with a particular condition from often all over the globe to meet together and that might be somebody's only opportunity to meet someone who has the same condition that they do and might have the same shared experiences. So that is only possible because of the digital age and to some extent social media. And of course social media is still regardless of how fluctuating and whether the algorithms are in your favor or not it's still a cheap way to talk about your work and reach a big audience that couldn't be done before really without things like radio ads, TV ads, which of course were super expensive and out of the reach of most small organizations and small businesses. So certainly from our point of view social media is key to distributing the content that we produce it's key to us reaching our audience and our subscribers and our sponsors so it's a really important part of communication. It's just a bit overwhelming sometimes.
SPEAKER_00I can imagine I hope you don't mind I want to go back to the disadvantages because you meant like sometimes information can be distorted or it can be fake news or people are spreading lies about diseases.
SPEAKER_01Is that what you meant when you said like here's where disadvantages or there's something we're skipping Yeah I think that's the a mixture of those things. So I think sometimes the quality of the information people share is inaccurate and that might not be done maliciously. I think there is an element of of course the downside to the way the algorithms work is that the more sensational your content tends to be the more viral that's going to go the bigger the reach is going to be so I think it doesn't lend itself to considered content anyway and of course you will have people that will take advantage of that. I think there's also a problem in that within rare disease everybody's experience might be different. Even with the same condition there will be variables and what works for one person may not work for another. So of course the other thing you have to be really mindful of when you're sharing information is that this is a personal perspective. And then I guess the third part of that is stigma also plays into this for a lot of countries. So for example we've done some work in the past with the albinism community. So albinism for anyone that doesn't know is a lack of pigmentation and that's the predominant way that it manifests so people will have no pigmentation in their skin and their hair there are lots of other underlying issues and so that's not a fair representation but that's the visible part. And so in countries like Africa that stands out as something that's really different from the population. And unfortunately people with albinism can often be seen to be either almost magical and mystical or bad luck. And so there is a huge problem in Africa of people with albinism being murdered for body parts, being victimized attacked often they have to actually have guarded encampments for people some in some places for people with albinism to live to be able to protect them. And so that's a very different experience if you're born with albinism there as opposed to being born with albinism in the UK or Scandinavia for example. So that's the other downside to social media is that of course some of that negativity comes out as well and actually there's a really interesting case and I I recommend anybody take time to read it and maybe I can put the link in the for you in your show notes where because of the digital age and digital communication there's an area who having not reacted like that to people with albinism before because they've heard of the stories of them being kind of magical from other places they've actually adopted that. And so their violence against people with albinism in this second country where there were no reported cases of it before are now on the increase and they're linking that directly to digital connectivity.
SPEAKER_00Yeah that's a concrete example I think it's shocking of course that that happens I had heard of it before that people with albinism need to be protected in certain regions in in Africa and it's horrible that that's happening and yeah I I don't have the answers either whether social media helps or doesn't help or you know I mean it raises awareness and those people obviously need help but on the other hand you might entice the people who are bad willing towards albinism people as well. So yeah it's a very difficult spot yeah.
SPEAKER_01In that particular case what the advocacy groups are finding are that actually on the ground in-person work is what is making a big impact.
SPEAKER_00So they'll hold big concerts pull people together with a concert and then do albinism awareness as part of that so I think it shows that there's still a place for in-person advocacy work as well as digital well let's jump from social media into AI because we would be amiss not to address AI and I know you've got something exciting uh with AI around rare evolution but before we do that I would like to go into AI in general and the awareness bit right so you say these rare disease charities they do a massive amount of work they need to be heard and we need to provide platform for them. Has AI helped with that or do you think AI has a role to play for those charities?
SPEAKER_01Yeah I think it from a charitable sector I think for all of us there's still a lot of learning for us to understand what AI is and how it can best help us all I think that in terms of workflow and there's obviously great benefits to be had you know essentially we've all been using a form of AI in one form or another for for a long time if you think about word and spell check and editor and things like that. But then we've now got the capability to kind of streamline workflows which I think and and do some of the use it to do some of the really heavy lifting of manual tasks that would have taken a long time before. I think another place that it can help is in the charitable sector anyway is things like drafts for you know there's a lot of policy that surrounds running an organization or a business, a small business and so things like using AI to help you draft some of your policies and then have those checked to take some of the cost burden away from developing some of that. I think there's lots of ways like that that AI is helping. On a broader scale I see in lots of technologies coming to the market that will be beneficial for the population, you know, for people living with rare diseases anything from things like eye gaze technology to you know robotics for limb differences to even things like we're seeing the application of AI in helping diagnoses for example pulling pulling from people's records and then suggesting possible diagnoses where you're seeing it in the use of drug repurposing we're seeing it in in terms of creating digital twins for early stage research so I think there's lots of ways AI and technology will be helping and supporting um the community now and of course that will only you know increase as things move forward.
SPEAKER_00Any downsides?
SPEAKER_01Yes for sure from a lived experience point of view I haven't seen it for a while but early on we started seeing the use of AI generated images to dep and video actually to depict lived experiences. So using an AI generated video of someone telling a rare disease story but not the person whose story it is I think that's a very slippery slope if you take out actual people from the lived experience. That's not something I'm really a fan of I think in terms of things like Copilot and Gemini and and ChatGPT they're screening huge amounts of data you know without permission to do so publicly available data and then turning that out the reliability of that we still know that sometimes there are hallucinations. It doesn't always get that content right how helpful that is and how detrimental it might be I'm I don't know. I think in from a publishing lens it's not great to think that you know because we're a small company big companies can just come and take all of our data and then use it to monetize their own platforms. And so that's actually something from our point of view that we've tried to take a bit of agency over and invest back into our company to develop our own AI tool which just looks at our content. So we have a tool that people can access now where it will take 10 years of our content but only our content and then you can ask questions of it in the same way that you would so our hope is that this is really helpful. I think particularly for busy professionals in the space we know they use our magazines to understand the landscapes that they might be working in. Well now that they can they can kind of do that by asking questions of the content instead of trawling back through 10 years to see if we wrote an article on a particular thing. So that's one area we're trying to take a bit more agency and invest back into publishing and I think we'll probably see that more in publishing but it's not mainstream yet. So we're we're really proud to have been able to take that step.
SPEAKER_00Yeah and I think it it has a it has also a more profound purpose because people can find very solid information on all these rare diseases in in kind of AI that you have created not kind of general so there is already some vetting has happened before people can use it and I think that that sounds like a great system and we're all about you know by night I'm a podcaster but by day I'm the CEO of a biocompany which is all about doing the right thing with biodata right and the the the privacy safety and security of such information because they're real life human beings behind these data sets. So just giving it into AI not knowing what's going to happen with it or how those platforms are going to work with the data further down I think those are guarantees that we need to have we need to be able to look under the hood before we just all say oh nice and lovely let's just all pump it in right because we don't know how that's going to come back to us and and I think we should be very cautious and careful.
SPEAKER_01And I think in rare disease as well we always talk about well you give your data and then only anonymized data comes out the other end. And that is fine when you're talking about huge data sets. But of course in rare disease you don't always have big data sets and of course the risk is that there will be ways that you can separate that data and someone then become very identifiable. So I think that's also a consideration when it comes to data and the use of AI and and the applications of what happens like you said downstream of that data needs to be really thought of carefully and really communicated well because I think a there's a lot of good that comes from having data sets. It's really the only way to progress in terms of research. So it's really important it happens but people must have trust that it's being done for the right reasons and also that it's not you know essentially we're asking people to give their most sensitive information for a company to then produce something that will make money.
SPEAKER_00Most definitely let's go back to rare revolution so do you think a revolution is needed?
SPEAKER_01I think we're in it. I think we are in the revolution I mean our name came about because we wanted to revolutionalize the way that the press talked about rare diseases. I once um had the honor of giving a lecture session to journalists about writing for rare diseases and as part of that what I did was looked at some headlines that were associated with articles in the press about people with lived experience. And these were people who had you know to try and raise awareness of their circumstances given interviews with the press and they ranged from things like boy seven eats himself to death which was a tragic story about a young boy with um a condition called Prada Willy where they have uh insatiable appetite and to even in our own condition uh real life vampires so the way that rare diseases was talked about in the press when we first started was very sensational was very kind of erring on the odd and the kind of like something to be intrigued about and we wanted to change we really wanted to revolutionalize that. So everybody sees every article that goes out. Everyone is allowed to review their article before it goes out regardless of whether it's something that is a sponsored piece or a piece of earned media we just don't write in that way. We wanted to be informative and educational we want to be able to show the challenges but also the realities of what life is like in in both good and negative but have stuff that's balanced and that people are proud of sharing their story. Don't mind their neighbours seeing it because that's the other thing you have to realise when you're telling someone's sensitive story then kids at school might see it or your friends or your family and so you want something that you can be proud of and not feel that your trust in journalism has been eroded by the need for a clickbait headline.
SPEAKER_00When I dove into Rare Revolution I also saw that you have rare youth revolution yes w w what exactly do you do for the youth?
SPEAKER_01So we in 2017 we were approached by um actually somebody who ran the British pediatric surveillance unit at the time guy called Richard Lynn and he said this is all well and good but what about young people? Their voices need to be heard and Richard's been a champion of children and young people for all of his career in research and science. And so that was what triggered the rare youth revolution which started off as a one-off magazine but actually has then become as its own website. So what we do there is we you know really share the voices of young people. So typically from kind of 13 upwards people young people can get involved and tell or share their stories whether that's through video content or written word or sometimes it's through art. They can also do things like you know come and work with us to do a social media campaign to raise awareness for their conditions and we also get involved with making sure that the young community are aware of things like research opportunities or engagement opportunities or speaker opportunities. So for example we've just been involved in a project called the Rarecare project which is a huge big project spanning many areas but we were asked to come to make sure that the young voice youth voices were represented and so we worked with the youth community to make sure that they were included within the surveys and the peer interviews. So just making sure that young voices are part of discussions because of course the challenges for young people are different to adults and their concerns are also different to their parents' concerns so it's nice to hear from them directly.
SPEAKER_00Yeah so we're now stepping into the summer so hopefully things are gonna shortly quiet down for us all to take a break. But what's next for you with Rare Revolution what's happening in September? What does that look like for you?
SPEAKER_01Yeah well in the world of publishing there's not a lot of settling down and quiet time ever unfortunately or fortunately so we have our next edition goes out in July and which is on the topic of rare skin disorders but really this year you know we have a very regular publishing schedule we'll be doing more of the same uh making sure that different rare diseases are being discussed in a really healthy and engaging way. I think further to the future as we discussed you know in terms of unmet needs we see a big gap in the need for a trusted communication platform in other countries which of course involves being in language and being in country and we'd love we know we're currently thinking about what's the steps that we could take to be able to publish in country and help support really good disease education in other countries you know kind of using using the Rail Rev way to be able to help other countries deliver really good quality education and awareness in their own regions. So that's something that's on our horizon for the future. But at the moment we had the new launch of the membership of course and the new AI tool just at the tail end of last year. So this year is all about making sure people know about that and making that as good as it could be. And then the future is how do we support this unmet communication need in other languages and then other regions.
SPEAKER_00Loads to crack on with. So how can one become a member?
SPEAKER_01If you Google Rare Revolution magazine or rare revolution insider, all the information's on the website, have a look there. And of course if anybody is looking for more information they're very welcome to reach out. But what I would say is if you you're sit sitting down in the sunshine with a cup of tea for 20 minutes, do go on, read something, learn about something that you didn't know about before, be curious because the chances are that whether you realize it or not, someone within your friendship group, someone within your extended family will be living with a rare disease and could benefit from just a bit of you know knowledge and empathy and understanding.
SPEAKER_00Yes, most definitely. And for my two very last questions Rebecca and I ask uh all my guests so I I've become an amateur researcher on morning routines and I think the reason for that is I'm trying to kind of find the perfect morning routine for myself. So I've taken it up on myself to ask each and every guest do you have a morning routine? And if so do you care to share?
SPEAKER_01I'm fascinated by this question and I'd love to get your um your insights from what people do. But I think as a working mum my morning routine is getting the youngest one out to school and then it's really dull. It's emptying the dishwasher and tidying up before you start work. I do spend probably 20 minutes to half an hour sitting outside with a podcast. I do love a podcast. So I kind of have a policy of sky before screen. So get outside in the fresh air, listen to a podcast, have my cup of tea before I start my day. So that's really the only thing that I do that I think is really important. You know we all spend a lot of time on screens now but I delay mine now until I've been outside sit in nature with a cup of tea and then crack on for the day.
SPEAKER_00So yeah it's not terribly exciting I'm afraid Aldo No it's good and which podcast do you have one that you could recommend?
SPEAKER_01Oh I I go between a lot. They're generally all either kind of business or self-improvement podcasts. So I like um uh the on-tree leadership I like things like um Simon Sinek I like um Mel Robbins there's a few that I kind of switch between depending on what the topic is and of course Louis Thurua was like a like listening to his guests so he's got a great interview technique.
SPEAKER_00Nice nice and now of course pulse by alpha wire that's uh yes exactly and then for my very last question which is actually about reading or not necessarily only reading could be kind of any type of content for people listening and for people who think oh I really love the career path of Rebecca and how she's kind of built this own organization Rare Revolution herself has there been any reading or content that has inspired you and that would you would advise for others to get into?
SPEAKER_01Ooh I think it's really hard because in terms of my path really it's been people that have shaped the direction I've come in and you know it's people as in loved ones in terms of our change to rare disease I was a hairdresser in a former life so my career change into rare disease is entirely down to lived experience. People in terms of I've had the privilege of working with a couple of really great mentors who I think everyone should have a mentor in their life it's it's I'm a real advocate for that. You know they celebrate with you they commiserate with you they give you the tough love that sometimes your family can't give you so I think between family and mentors that's really how I've ended up where I am today. But in terms of literature I always love books that are around experiences, lived experiences and language and words. So one of my favourite novels is a book called The Dictionary of Lost Words by Pip Williams and it's a novel but it's based around the creation of the Oxford English Dictionary. One of the men that are in there creating the dictionary has a child his wife dies and so his child comes to work with him and sits under the table where they're got all these little postcards of words that they're including and she's collecting the ones they throw away and discard. And I just love that idea of and I think not too dissimilar to your books the children's books that you're talking about with the lost things, you know the forgotten things I love the idea of how language evolves and how it changes. So that's one of my favorite kind of novels but other than that it would be just learning from other people's lived experiences is great.
SPEAKER_00Thank you so much uh Rebecca and Rebecca's referring to Bright Star Bazaar which I haven't spoken about on the podcast just yet so this is a scoop because um we're going to publish is a a book series all about lost objects or forgotten objects to explain to the next generation how these objects at one point in the history of the world kind of changed our lives or who we are as human beings. So think of a a typewriter a compass a standing clock the first phone you know you name it there are so many objects there and I got inspired and started writing out uh about that but that was a complete tangent because it isn't about me it it it it it was about you uh Rebecca Stewart thank you so much for being a guest and thank you so much for the great work you do uh with uh Rare Revolution thank you so much for your time Rebecca Stewart thank you it's a pleasure and thank you so much for having me you've listened to Pulse by AlphaWire produced by Natalie Piles and Amela Faisal with great music The Optimist written by Holly Hamill performed and produced by Alo episodes hosted weekly by me Aldo DePaul You've listened to Pulse by Alphawire produced by Natalie Piles and Amela Faisal with great music The Optimist written by Holly Hamel performed and produced by Alo. Episodes hosted weekly by me Aldo DePop