EPISODE · Jun 4, 2025 · 49 MIN
Mental Health and Rare Disase with Frank From New York
from Rare Connection · host Joanna
Send us Fan Mail🧠 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 anxietyOver 66% experience depressionMany are bullied, misunderstood, or feel completely alone🎧 In this live episode, we’ll explore:How rare diseases impact mental healthWhy so many patients feel dismissed or isolatedWhat it will take to get emotional support to those who need it mostHow 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 #YouAreNotAlonehapter Markers00:00 Intro03:21 Biggest challenges Mental health patients face Both Physically& emotionally06:31 Anxiety and waiting on results09:08 Parent of a nonverbal child doesn;t know if the child is in pain or distress15:17 Medical Gass lighting18:58 Balancing Fear & hope21:10 Damage of negative thoughts over time 24:17 Barriers & progress to affordable mental health29:32 Informational resources on Rare diseases40:51 Suicide Attempt42:48 supporting the effort to make mental health accessable in rare disease47:32 conclusionSupport the show
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Send us Fan Mail 🧠 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 i...
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Mental Health and Rare Disase with Frank From New York
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