Welcome to the Community Spotlight series! Each month, PeDRA will shine a light on a different patient advocacy organization, highlighting the incredible work they do to support patients and families, the important role they play in research.
National Eczema Association
Eczema’s range in severity means each patient experience is different from the next and no two stories are the same. Young Ella has lived with severe eczema since she was 8 months old. Now, as a 6-year-old in first grade, she’s finally able to experience some relief and feel like a “normal” kid. Ella and her mom, Amy share their story, and how the National Eczema Association helped them navigate this disease and how Ella was finally able to eat ice cream and go to the beach.
Pachyonychia Congenita – PC Project
Pachyonychia Congenita is a rare and extremely painful dermatologic disease. For many patients a clear diagnosis isn’t even made until adulthood. PC Project aims to change that with a patient registry and free genetic testing. Patients and families come to PC Project for support from a community that knows and understands them, but also to advance the science. Due to the success of the international registry, data provided by patients is fueling research at an accelerated pace, and has led to a successful partnership between PC Project and Palvella Therapeutics. June is PC awareness month, and we’re shining a light on the incredible work of PC Project with our first Community Spotlight. Hit play to learn about PC Project through a special interview with Janice Schwartz, PC Project’s Executive Director. You can learn more about PC Project and ways to get involved by visiting www.pachyonychia.org.
June is pachyonychia congenita (PC) awareness month and we’re continuing our Community Spotlight on PC Project with a special mom and daughter interview. Hear from an amazing young woman and her mother as they discuss the realities of PC and illustrate the importance of accelerating PC research.