🧠 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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