The Fanconi Anemia Research Fund is committed to providing education and support services to families around the world affected by FA. The Fund sponsors a variety of programs and services to assist the FA patients and their families who register with us (at no cost). To register, or to learn more about the Fund's family support program and free services, please contact our Family Services Director, Marie Sweeten.
Family Support Network
- Online Support Groups: The Fanconi Anemia Research Fund manages a Yahoo listserv Support Group and a "secret" Facebook support group, which allow adults with FA and parents of children with FA to exchange questions and information with others affected by FA. Many families find the online community to be a valuable and readily available source of information to help them deal with the diagnosis and effects of Fanconi anemia. To request to join an E-group, contact Marie Sweeten, our Family Services Director: E-mail: firstname.lastname@example.org, Telephone: 541-687-4658, Toll-free within the United States: 1-888-FANCONI (888-326-2664).
International Family Support Network: International families may wish to access additional support within their home countries. Our International Support page provides contact information for FA support groups around the world.
The Fund provides education to those affected by FA. Our Annual Family Meeting brings specialists and families together, providing parents and adults with FA with the latest information on health care guidelines, as well as giving children with FA opportunities for leisure activities in a supportive environment. In addition, the Fund periodically sponsors FA information and support meetings to educate and inform families of the latest treatments for FA and meetings for adults with FA.
A series of five videos about Fanconi anemia, produced by Víctor Graupera, a graduate student at the UAB (Barcelona, Spain) provides a great overview of FA. The videos are available both in English and in Spanish:
Finding more effective treatments and a cure for FA depends on research. FA patients are encouraged to consider utilizing molecular diagnostic testing at OHSU Knight Diagnostic Laboratories, participating in clinical trials and other research opportunities. These opportunities are designed to further the study of FA and, in some cases, provide cutting-edge treatment to patients. The gene therapy clinical trial in Seattle is open for FA-A individuals 4 year old or older. For more information, click here. In addition, all families affected by FA are asked to contribute to FA research through research sample donation. The National Disease Research Interchange (NDRI) is the Fund's partner in biospecimen sample collection.
- The Fund publishes an International Fanconi Anemia Treatment and Testing Resource Guide for families.
- Additional cord blood awareness - the Cord Blood Center is a new organization dedicated to promoting the benefits of public cord blood banking. Contact them at at cordbloodbanking.com for up-to-date information and free resources for expecting parents.
- Family web pages connect to individual FA patients' websites. Many families also have Facebook pages (not listed here).
Information about applying for Social Security Disability Benefits
For information about applying for Social Security disability benefits for both adults and children affected by Fanconi anemia, click here. This information was provided by Deanna Power, Community Outreach Manager, Social Security Disability Help.