fibromuscular dysplasia support, education & advocacy
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Fibromuscular dysplasia (FMD) is a complex disease that is most commonly seen in women, with systemic presentation that may include dissection or aneurysm most commonly in the renal and carotid arteries, low bone density, joint laxity, degenerative disease in the spine, migraine-like headaches, dizziness, and tinnitus. FMD is considered a rare disease; however, it is also believed to be underdiagnosed.

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Thursday, January 3, 2013

FMD Chat Prepares for Rare Disease Day, Feb. 28

In celebration of Rare Disease Day and the 2013 theme, Rare Disorders Without Borders, fibromuscular dysplasia patients and those affected by FMD around the world are asked to email pictures of themselves and a brief story about how FMD has impacted their lives to FMD Chat. 

Pictures and stories will be shared on FMD Chat's website and Facebook page in the weeks leading up to Rare Disease Day, and FMD Chat will showcase the disease's impact across the globe. 

To participate, email FMD Chat at fmdchat@gmail.com with a picture of yourself and a story about how FMD has played a role in your life—as a patient diagnosed with the disease, as the family member or friend of a patient, or as a caregiver to FMD patients. Be sure to include your first name and the initial of your last name, as well as information about where you live (town and country). 

The deadline to submit photos and stories is Feb. 20, 2013. Be sure to tell other patients and healthcare providers about the opportunity to spread awareness of FMD and Rare Disease Day!

 
Need resources to learn about Rare Disease Day and help spread the word? Check out the following links. EURORDIS and National Alliances for rare diseases are inviting all patient organisations, caregivers, researchers, public authorities and companies developing orphan products to join in this observance. The purpose is to focus attention on rare diseases, the challenges encountered by those affected, and the inequalities that rare disease patients face every day.