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
This virtual meeting is an opportunity for individuals diagnosed with Fanconi Anemia Neurological Syndrome (FANS) and their families to gather, share experiences, and find mutual support for navigating FANS. Registration is required and participants must speak English as interpretation is not available. Time: 5:00 - 6:30 pm Pacific Time
Join Lori Krause for a workshop designed to explore and process “living losses”—non-death-related losses that arise from life transitions, changes, or unmet expectations. Examples of living losses include the loss of identity, health, relationships, careers, or abilities. Participants will gain tools to acknowledge these losses, better understand their emotional impact, and...
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...
This virtual meeting is an opportunity for individuals diagnosed with Fanconi Anemia Neurological Syndrome (FANS) and their families to gather, share experiences, and find mutual support for navigating FANS. Registration is required and participants must speak English as interpretation is not available. Time: 5:00 - 6:30 pm Pacific Time
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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.