Rare Connection
Rare Connection is a podcast dedicated to rare diseases, undiagnosed conditions, patient advocacy, medical research, and the people working to improve the lives of those living with rare disorders.
Originally launched as Nutrition Equity, the podcast expanded into Rare Connection to reflect its broader mission: sharing the stories, science, and research behind all 10,000+ known rare diseases—not just those related to the Medical Nutrition Equity Act.
Each episode features conversations with patients, caregivers, physicians, researchers, nonprofit leaders, advocates, and biotechnology experts. Together, we explore rare diseases, genetic disorders, newborn screening, clinical trials, emerging treatments, healthcare policy, diagnostic journeys, and the challenges of living with conditions that are often misunderstood.
In medicine, common conditions are often referred to as "horses," while rare diseases are known as "zebras." Although each rare disease affects relatively few people, more than 300 million people worldwide live with a rare disease. Collectively, rare diseases impact more people than many realize, yet they are frequently underdiagnosed, misdiagnosed, or diagnosed only after years of searching for answers.
I host this podcast not only as an advocate, but also as someone living with Homocystinuria (HCU), a rare inherited metabolic disorder. I understand firsthand how isolating a rare diagnosis can be and how important education, research, and community are for patients and families.
Whether you are a patient, caregiver, healthcare professional, researcher, policymaker, student, or simply curious about rare diseases, Rare Connection aims to educate, inspire, and connect people through real conversations and expert insights.
Video episodes are available on YouTube through Rare_Chef, with audio available on all major podcast platforms.
If you have a rare disease, undiagnosed condition, or work in rare disease research, advocacy, or healthcare and would like to be a guest, I'd love to hear from you. Please contact me at joanna.ball41@gmail.com.
Rare Connection is more than a podcast—it's a growing community. Beyond sharing educational interviews, I help connect patients and families with rare disease organizations, Facebook support groups, advocacy groups, clinical trial information, researchers, and others who may be able to provide support or answer questions. Sometimes the most important step is simply helping someone realize they are not alone.
Rare Connection
Global Drug Access For Rare Diseases With Aayush Goyal of MedsPartner
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Imagine discovering that a life-saving treatment for your rare condition exists — but you can’t get it because it’s not available or affordable in your country. That’s the reality for countless families around the world.
In this global episode of Rare Connection, host Joanna Ball sits down with Aayush Goyal, founder of MedsPartner, a platform that helps patients legally access medications from other countries through the named patient import pathway.
We cover:
🔹 The rare disease drug access crisis across borders
🔹 How MedsPartner helps navigate regulatory challenges
🔹 The hidden legal system most doctors and patients don’t know about
🔹 Real stories of families who found hope when doors seemed closed
🔹 How advocates can spread the word about this life-saving option
🌍 Learn more about MedsPartner: https://www.medspartner.com
📝 Contact: connect@medspartner.com
📲 Follow: @medspartner on social media
🎙️ Listen to Rare Connection on Apple Podcasts, Spotify, Amazon Music & more
🎥 Watch more episodes here on the Rare Chef YouTube channel
🧡 Support the show: Buy Me a Coffee
⚠️ Trigger Warning: This episode includes discussions about treatment barriers, health inequity, and medical frustration.
🆘 If you are in crisis or need emotional support:
📞 Call or text 988 in the U.S.
📱 Or text HOME to 741741 for the Crisis Text Line
You are not alone.
#RareDisease #GlobalHealth #MedsPartner #DrugAccess #NamedPatient #JoannaBall #RareConnectionPodcast
Chapter Markers
00:00 intro
01:57 What inspired Ayush to create Meds Partner?
04:21 How big is the drug access problem globally?
08:53 What conditions most people reach out about?
10:30 What is Named Patient Importation and how does it work?
14:39 Problems with doctors not knowing about the program
17:11 Risks and Misunderstandings
2048 Is a doctor allowed to prescribe a med that isn't available in their country?
22:01 Examples of impact on rare disease families
24:55 Which countries are the most challenging and which are getting it right?
26:26 biggest opportunities for policy change
29:25 Raising awareness for this access option
32:02 Hopes in terms of collaboration & support
34:03 current projects
35:17 Conclusion