Advocacy efforts play an essential role in building stronger systems of care for rare diseases. By elevating the experiences of families and engaging policymakers, organizations such as the Ivan & Joan Foundation are helping move rare disease awareness and care forward in their communities.
Events
FANS Family Support Meeting: A Conversation with Dr. Stella Davies
This virtual meeting is an opportunity for individuals diagnosed with Fanconi Anemia Neurological Syndrome (FANS) and their families to gather, find mutual support for navigating FANS, and hear from leading FANS physician and researcher, Dr. Stella Davies. Dr. Davies is the Director of the Division of Bone Marrow Transplantation and Immune Deficiency at Cincinnati Children’s Hospital. Registration is required and participants must speak English as interpretation is not available.
This meeting will be held 4:00 – 5:30 pm Pacific Time.
FANS Family Support Meeting: A Conversation with Dr. Stella Davies
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My name is Kambri, and I’m 17 years old. I was diagnosed with Fanconi anemia when I was five. Before my diagnosis, I just didn’t feel good for a while. I had frequent nosebleeds, bruised easily, and was tired a...
What I hope for most is a cure. And until then, I hope for Paige and others with FA to live lives as close to normal as possible, filled with opportunity, independence, and happiness.