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.
Directory
Ana Alejandra Tabar
Member
Ana Alejandra Tabar is 34 years old and currently lives in New Jersey, though she grew up in the Dominican Republic. In 1999, her oldest brother was diagnosed with Fanconi anemia, prompting Ana to be tested and subsequently diagnosed as well. Sadly, her brother passed away in 2000 from leukemia. He inspired Ana and her family to establish “Un Corazón por Fanconi,” a foundation focused on developing a diagnostic protocol for FA patients and spreading awareness about FA in the Dominican Republic. Ana works as a graphic designer and loves art, warm weather, the beach, and spending time with her family.
The Latest
News & Events
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.