Hemophilia with Patrick James Lynch From Believe limited

Send us Fan MailPatrick James Lynch is a Hemophilia patient, and advocate, fim maker and podcaster. His films include Bomardier Blood, Deliver Us and My Beautiful Stutter as well as many others, He has been won several awards including the Rare impact award from the National Association for Rare Disorders (NORD) the Meritorious service award in and he has also been a keynote speaker for the World Federation of Hemophilia WFH. Patrick dedicates his work to his brother who sadly passed away in 2007 at the age of 89. His brother was also a hemophilia patient and a retired news anchor from Pittsburgh, PA. Patrick now lives in California where he continues to film and advocate for rare conditions through story telling. Please subscribe to my YouTube channel Rare Chef so that you don't miss an episode You can also subscribe on whatever platform you are listening to this on. Feel free to use the link in the show notes to text me. I would love to hear from you. You can also visit my website rareconnection.org to join my email list, and connect with other rare disease patients, signup for my podcast, and stay updated as rare connection becomes a nonprofit. Finally you can join our Facebook group and visit the Facebook Page.Chapter Markers00:00 Intro04:01 Hemophilia explained05:43 Patrick's brother had hemophilia also06:04 Genetics06:53 Path to Film Making & Advocacy13:51 How Adam's memory has shaped Patrick's approach to Advocacy and story Telling15:32 Transgorming challenges into advocay19:22 Inspiration for believe Limited 21:11 Coming up with a name for the company23:06 How awards have influenced Patrick's work25:20 Key messages from speaking engagements28:41 Potential for advocacy extending to other diseases31:09 Upcoming projects35:05 Advice to Others38:18 Long term Goals40:10 conclusionSupport the show

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This episode was published on August 31, 2024.

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