Those affected by fibromuscular dysplasia around the world now have a new option through which to interact with one another as the result of a partnerhship between FMD Chat and RareConnect. RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.
"We are thrilled to announce the launch of our 28th online community—Fibromuscular Dysplasia," said Alexandra Freitas, NORD's RareConnect Online Communities Coordinator. "It has been such a pleasure working with FMD Chat. This community would not have been possible without their dedication to this initiative."
FMD Chat's RareConnect community has several benefits. First and foremost, the community affords users the opportunity to engage in the worldwide exchange of information about FMD. Fibromuscular dysplasia crosses geographic and cultural boundaries both for patients and the medical professionals who are studying the disease. International connection can do nothing but help raise awareness of this rare disease and help patients around the world feel less alone in their diagnosis. RareConnect has the tremendous benefit of offering translation services to facilitate this exchange of information. RareConnect supports German, English, Spanish, French, and Italian. RareConnect's community platform also provides users with additional privacy options. While real names are attached to most Facebook profiles—FMD Chat's previous social media platform of choice—RareConnect allows users to create a profile with a username, as well as choose privacy settings for each posting.
The RareConnect platform is set up with three sections—meet, understand, and learn. The “Understand” section of RareConnect promotes awareness and understanding through daily life experiences. The “Meet” section of RareConnect provides a safe place to meet friends, ask questions, start or join conversations, and interact with others experiencing the same challenges. The “Learn” section of RareConnect links to FAQs, published articles, upcoming events, and other documents providing the latest information for each disease-specific community.
To join the new FMD Chat community, register with RareConnect, set up a profile, and then chose "fibromuscular dysplasia" from the community menu. FMD Chat also can be found on Facebook, Twitter, and at fmdchat.org.
Fibromuscular dysplasia (FMD) is a complex disease that is most commonly seen in women, with systemic presentation that may include stenosis, aneurysm or dissection most commonly in the renal and carotid arteries, migraine-like headaches, dizziness, and tinnitus or a swooshing sound in the ears. Low bone density, joint laxity and degenerative disease in the spine also have been linked to the disease. FMD is considered a rare disease; however, it is also believed to be underdiagnosed.