Organization: FMD Chat

Join FMD Chat participants for a social and educational retreat in the mountains of North Carolina on Sept. 8.

The retreat, held at the Crowne Plaza Resort in Asheville, NC, will begin with a meet and greet, following a warm welcome to Liz Donohue, Director, Coordination of Rare Diseases (CoRDS) at Sanford Research.

The CoRDS registry is a national and central registry of individuals who have been diagnosed with a rare disease. The registry is open to all rare disease patients, including those who are as of yet undiagnosed, increasing the registry’s appeal to researchers. The CoRDS Registry at Sanford Research is a member of the International Rare Disease Research Consortium (IRDiRC), an international group formed to work together across the globe in order to speed up research in the areas of rare disease.

“Being a part of this international consortium is an honor for Sanford Research. Because rare diseases do not impact a huge percentage of our population, they can be difficult to study and understand because the pool of volunteers is so small,” Donohue was quoted as saying in a recent news release about the program. “Work on rare diseases is being done around the world. Instead of working independently in silos we will now be able to pool our resources and make sure we’re heading forward in the same direction.”

Rather than traveling miles to a registry center or to see a specific doctor, patients who wish to enroll in the registry may do so on their own, for free, from the comfort of their own home. The registration process may be conducted entirely online or by mail. Patients provide basic contact, demographic, and clinical information, which is stored in a secure database system at Sanford. Only researchers who have secured Institutional Review Board and advisory board approval from Sanford Research and staff may view the data. If a researcher wishes to contact an enrolled patient, the researcher must first contact CoRDS. CoRDS in turn contacts the patient with the researcher’s information. It is up to the patient whether he or she wishes to proceed by contacting the researcher. If the patient wishes to enroll in the researcher’s study, the patient goes through an entirely separate consent process specific to the study. This process gives patients greater access to registry services and greater control over what studies are done using his or her information. Registry participants are never required to participate in any study; however, individuals and families are kept aware of opportunities to participate in research studies or clinical trials.

“Collaboration is incredibly important to rare disease research,” Donohue said. “We are delighted to partner with FMD Chat to provide a greater awareness of the CoRDS registry among individuals diagnosed with FMD.”

At the retreat, FMD Chat’s founder, Sarah E. Kucharski, also will present information about the organization’s happenings and future plans. The retreat will conclude with a hands-on project, “Exploring the Patient Experience Through Art,” which will allow all those in attendance to exercise their creativity.

Registration for the event is $25 per person. A $15 “There in Spirit” option is available for those wishing to contribute to FMD Chat but unable to attend.

Retreat registration must be completed by Aug. 31. Visit fmdchat.org and click on Connect & Contact to link to the FMD Chat Together registration page.

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