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June 4, 2025 β€’ 49 mins

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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.

πŸ“Š 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

πŸ’¬ Ask questions live in the chat, and be part of this important conversation.

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

πŸ“Œ Resources & links will be available in the video description after the stream.
πŸ“² For audio listeners, check your show notes to send me a text or support the show.

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

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

& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

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