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.
Tell Us About Yourself
Your Story Matters
At FCF, we believe in the power of stories to connect, inspire, and inform. Whether you or a loved one lives/lived with Fanconi anemia, your experience is an important part of our shared community. We’d love to hear about it. Use our easy-to-follow form to submit your written story or video story.