Fanconi Anemia Clinical Care Guidelines
This handbook is for physicians who provide primary care for FA patients, as well as patients and families who wish to develop a more comprehensive medical understanding as they work to secure optimal treatment through consultation and appropriate referral.
Clinical Trials and Research Opportunities
New treatments and therapies for people with Fanconi anemia are not possible without research. Read about the current clinical trials and research opportunities available and learn more about eligibility and protocol descriptions. If you’re interested in participating in a clinical trial, scholarships are available from FARF in order to help offset the cost of transportation and housing.
Info to Share with Your Doctor
Because FA is a rare disease, many of your local physicians may not be familiar with treating someone with FA. It’s important for you to provide your/your child’s physician(s) with information specific to the diagnosis and management of FA.
Join the FA Patient Registry
The Fanconi Anemia Registry is a powerful opportunity for individuals with FA and their family members to contribute directly to research that will enhance our understanding of the disease, thus facilitating the development of new diagnostic and treatment options. Participation is especially vital given the rarity of FA – every patient experience is a unique and invaluable part of the natural history of FA.
Tissue samples from biopsies and tumors removed by surgery from people with FA are critical for advancing research and clinical care. The best way to understand FA cancers is to study the progressive development of tumors by analyzing human tissue before tumor cells form, and from the actual tumor.
Signing up with FARF gives you access to educational materials, resources, support services, and community. All information and services are free, and your information is kept confidential.
This group has a wonderful amount of knowledge to share & will send you positive vibes when you lack strength. It’s a wonderful outlet for questions, information, love, and support throughout the journey.