Familial Mediterranean Fever is a rare genetic autoinflammatory disease caused by mutations in the MEFV gene.
I only discovered I have FMF a few weeks ago. I also live in Maryland : ) I have joined another FMF support group (through Yahoo) that perhaps you are also part of? : ) Avi
My son was diagnosed with this rare disease about a year ago after being sick for 2 years. So far the main resource that i have found with information is NIH. We are still working to manage this disease and my son still has frequent attacks. There is no support group or resource help group. I am looking for medical professionals who work with FMF or others who either have this rare genetic disease or know someone who does. Thanks, Mom in Maryland
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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