Mental Health and Rare Disase with Frank From New York Artwork

Rare Connection

Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture. Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime. As someone with a rare condition myself (Homocystinuria or HCU), know that having a rare condition can be very lonely. Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death. If you are interested in talking and feel comfortable on camera please contact me at joanna.ball41@gmail.com. I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.

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Rare Connection

Mental Health and Rare Disase with Frank From New York

June 03, 2025 • Joanna • Season 5 • Episode 1

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🧠 Mental health is rarely optional when you're living with a rare disease. Join Joanna, host of Rare Connection, for a powerful live conversation with Frank, a rare disease patient and mental health advocate who's working to make support more accessible for our community.

🌍 Living with sarcoidosis and other chronic conditions, Frank brings a deeply personal and professional perspective. He recently moderated a panel on mental health at the World Orphan Drug Congress USA and is now leading efforts to help rare disease patients find affordable, qualified mental health care providers.

📊 Did you know?

75% of rare disease patients report symptoms of anxiety
Over 66% experience depression
Many are bullied, misunderstood, or feel completely alone

🎧 In this live episode, we’ll explore:

How rare diseases impact mental health
Why so many patients feel dismissed or isolated
What it will take to get emotional support to those who need it most
How YOU can help push for mental health equity in rare care

💬 Ask questions live in the chat, and be part of this important conversation.

🔔 Subscribe to Rare Chef so you don’t miss the live broadcast or future episodes.

📌 Resources & links will be available in the video description after the stream.
📲 For audio listeners, check your show notes to send me a text or support the show.

📣 Let’s break the silence around rare disease and mental health. See you live!

#RareConnection #RareDisease #MentalHealthMatters #Sarcoidosis #RareChef #PatientAdvocacy #YouAreNotAlone

hapter Markers

00:00 Intro
03:21 Biggest challenges Mental health patients face Both Physically& emotionally
06:31 Anxiety and waiting on results
09:08 Parent of a nonverbal child doesn;t know if the child is in pain or distress
15:17 Medical Gass lighting
18:58 Balancing Fear & hope
21:10 Damage of negative thoughts over time
24:17 Barriers & progress to affordable mental health
29:32 Informational resources on Rare diseases
40:51 Suicide Attempt
42:48 supporting the effort to make mental health accessable in rare disease
47:32 conclusion

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