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
FA Connect | Rewriting the Holidays After Loss: Finding Strength and Comfort While Grieving
We recognize the holiday season can be difficult amidst grief, whether caused by the loss of a loved one, anticipatory grief, or living losses. Join Lori Krause for this workshop where participants will acknowledge and validate their emotions, then discuss practical tools to cope with grief during the holidays.
5:00 – 6:30 pm Pacific Time
Spanish interpretation services are available upon request when registering for the session. Please note that while we will do our best to provide interpretation, we cannot guarantee their availability.
FA Connect | Rewriting the Holidays After Loss: Finding Strength and Comfort While Grieving
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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.