FMD CHAT

Cause Area

  • Advocacy & Human Rights
  • Board Development
  • Community

Location

934 Norland RoadApt BCharlotte, NC 28205 United States

Organization Information

Mission Statement

FMD Chat is organized and shall at all times be operated exclusively for educational, scientific and charitable purpose: to support individuals with and families of patients with fibromuscular dysplasia(FMD), a rare disease, and its associated connective tissue disease diagnoses; to participate in the education of FMD patients, healthcare professional, policymakers, and the general public regarding FMD; to partner with healthcare professionals, faculty and others to conduct or support research in FMD; and to pursue such other charitable activities so as to educate and support FMD patients and their families worldwide.

Description

FMD Chat is an international 501c3 nonprofit organization providing fibromuscular dysplasia support, education & advocacy fo r patients, family members, caregivers, and healthcare professionals.

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 may present at any age, but is more commonly discovered when the patient is between the ages of 20 and 60 years old. Patients may be asymptomatic and achieve diagnosis only upon an incidental finding, or patients may suffer serious and debilitating events, depending on the severity of their disease.

FMD is considered a rare disease; however, it is also believed to be underdiagnosed. In the U.S., a disease is defined as rare if it is believed to affect fewer than 200,000 Americans, according to the National Organization of Rare Disorders. A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. FMD has no cure and no specifically approved FDA treatment. Patient care currently focuses on managing symptoms, monitoring vascular involvement, and surgically repairing vascular damage.

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