fibromuscular dysplasia support, education & advocacy
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.

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Disclaimer


FMD Chat is a patient-run, international support organization dedicated to those affected by fibromuscular dysplasia including patients, family members, caregivers, and healthcare professionals. 

FMD Chat (officially incorporated under the name FMD Chat Inc.) facilitates this site as part of its voluntary services to the FMD community. FMD Chat was founded Oct. 9. 2011, incorporated within the state of North Carolina on June 5, 2012, and designated a 501c3 on Feb. 20, 2014. Use of this site or any other FMD Chat-administered site does not convey any membership status, as FMD Chat is not a membership-based organization per its bylaws. Per these bylaws, FMD Chat was established 1. to support individuals with and families of patients with fibromuscular dysplasia (FMD), a rare disease, and its associated connective tissue disease diagnoses; 2. to participate in the education of FMD patients, healthcare professional, policymakers, and the general public regarding FMD; 3. to partner with healthcare professionals, faculty and others to conduct or support research in FMD; and 4. to pursue such other charitable activities so as to educate and support FMD patients and their families worldwide.

If you have a medical question, contact your doctor. Information FMD Chat provides is not intended or recommended as a substitute for professional medical advice, is for general information only, and is designed to support, not replace, the relationship between you and your physician. Always talk with your doctor about your symptoms, diagnosis, testing, and treatment.

Participants must use their own discretion before making any decisions based on the information obtained through FMD Chat. FMD Chat cannot be responsible for any loss, damage or expense that might be caused by any action, or lack of action, that a person might take as a result of using and participating in FMD Chat. FMD Chat will not compensate participants in any way whatsoever if they suffer a loss/inconvenience/damage because of/while making use of FMD Chat or information obtained through FMD Chat. FMD Chat cannot accept responsibility for any errors or omissions.

For the privacy and protection of those involved, discussions are to remain private. Disclosure of conversations from FMD Chat's sites or disclosure of patients' private health information are grounds for an individual's removal from FMD Chat's sites. FMD Chat does not share information about its participants such as name, email address or other personal information without consent.

FMD Chat does not discriminate on the bases of race, color, national origin, religion, sex, age, or disability, and moderators will not tolerate the use of threatening or profane language. Such actions on the FMD Chat sites are grounds for removal. Interactions among participants cannot and will not be monitored outside the confines of FMD Chat’s sites.

FMD Chat is a member of Global GenesRare Disease UK; and an associate member of EURORDIS, a non-governmental patient-driven alliance of patient organisations representing 544 rare disease patient organisations in 49 countries covering more than 4,000 diseases. FMD Chat works in partnership with Smart PatientsRareConnectNeedyMeds prescription drug discount card program and the Coordination of Rare Diseases at Sanford registry program, which provides a free, online registry for all rare disease patients. FMD Chat is not affiliated with FMDSA.

FMD Chat does not accept advertising nor receive any revenue from any advertising or trade agreement. Although not subject to the “Health Information Portability and Accountability Act," FMD Chat aims to meet or exceed the HIPAA standards. Information collected as a result of signing up for the FMD Chat newsletter, contacting the organization, or contributing as a donor will not be sold or otherwise transferred to a third-party and only will be used to communicate about the FMD Chat organization and its services.