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The International Fibrodysplasia Ossificans Progressiva (FOP) Association (IFOPA) serves families living with the ultra-rare genetic disease fibrodysplasia ossificans progressiva, as well as researche... more
FAQs about IFOPA Podcast Series:How many episodes does IFOPA Podcast Series have?The podcast currently has 23 episodes available.
March 05, 2021Oh yes, Honey!Turning hobbies and passions into a fundraising opportunity is the easiest way to raise money for FOP research and family education and support programs. Learn how FOP mom Tiffanie Williams did just that and get the buzz on her sweet fundraising and awareness project....more27minPlay
February 22, 2021Creating a Story with ImpactIn our February episode of the IFOPA podcast series, IFOPA Family Services staff Hope Newport interviews Shannon von Felden, Rare Disease Legislative Advocates and Katie Burns, SmithSolve to discuss why it's important to share your rare disease experience, what to keep in mind when speaking to others and two programs which were established to support the rare community in using their words as a vehicle for creating change. FOP community members residing in the United States can participate in the following programs Learn more about the Fast Forward for Rare Program by visiting their website Sign up to participate in Rare Across America programming from February 22 to March 5, 2021...more21minPlay
February 11, 2021Advocacy: You Can Make A DifferenceIn this first episode of the Advocacy Series podcast, IFOPA Family Services staff Hope Newport and Karen Kirchhoff discuss what advocacy means, the different types of advocacy and 10 skills to becoming an effective advocate. ...more31minPlay
FAQs about IFOPA Podcast Series:How many episodes does IFOPA Podcast Series have?The podcast currently has 23 episodes available.