About our project
Do you know someone who has had arthritis? How about someone who has had breast cancer? Perhaps diabetes? These diseases are relatively common. Chances are that at least you know someone who knows someone who has had one of them. But do you know anyone with fibromuscular dysplasia?
What is Fibromuscular dysplasia?
Fibromuscular dysplasia is a rare, noninflammatory, nonatherosclerotic arterial disease that occurs most commonly in women and presents most frequently in the renal artery. FMD may cause arterial stenosis, occlusion, aneurysm, and/or dissection; however, many patients are asymptomatic and may remain undiagnosed or receive diagnosis as an incidental finding. Just how rare is FMD? It’s hard to tell. FMD is officially recognized as a rare disease. In the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans. Other estimates indicate that the disease may simply be underdiagnosed.
What we aim to do
For now, FMD patients are far and few between. FMD Chat aims to connect patients, family members, friends, healthcare providers—all those affected by FMD—in a global, peer-to-peer support network based on social media. FMD Chat celebrates the whole patient by recognizing that patients are more than their disease.
FMD Chat closes the physical and cultural differences among patients by relying on social media to connect across continents. Using established social media networks, FMD Chat already has brought together patients from the United States, Australia, Brazil, Canada, Germany, Norway, South Africa and Sweden so that they may support one another, discuss symptoms and side effects, help prepare for surgery, develop questions to ask their doctors and more. The global connection helps ensure patients share and learn from a variety experiences. Additionally, FMD Chat reaches out to the public through an organizational Website through which diagnosed patients share their stories about living with FMD and medical readings and international resources are provided to help raise awareness and understanding of the disease.
Empirical Support
A recent survey by the Pew Internet Project and California Healthcare Foundation found that people dealing with rare diseases are the undisputed power users of health information online. “People want emotional support from their peers,” says Susannah Fox, associate director of the Pew Internet and American Life Project, and author of the survey, which surveyed 3,001 adults in the general population and 2,156 members of the National Organization for Rare Disorders. "The rare disease communities show that people are ready and willing to share with each other so that other people can benefit from their experiences.”
For the Patients
FMD Chat helps patients by providing a direct link for fibromuscular dysplasia patients to find emotional support from their peers. Participants within the FMD Chat community have time and again said that their FMD family often understands their needs more so than their “real” family. Peer-to-peer support offers something truly unique—the chance for a patient to hear someone say “me too” and mean it. As FMD Chat grows internationally, more patients will be able to connect not just with someone who has the same disease, but someone who speaks the same language and lives in the same country.
For the Providers
Doctors aren’t always pros at providing emotional support. It’s even harder when a disease is so rare that a doctor may have never had any other patient in his or her career with the disease. FMD Chat welcomes healthcare providers to the community so that they may learn about fibromuscular dysplasia, connect with patients and refer their own patients to reach out and connect with others via social media. FMD Chat takes the burden off of healthcare providers struggling to find local support group resources—and as an extra benefit, patients need not be able to attend a specific meeting; they can log on whenever and from wherever they like. Medical facilities may not have staff experienced in dealing with fibromuscular dysplasia patients’ needs and perhaps not a lot of time to learn. FMD Chat provides a basic overview of the disease from the patient perspective as well as links to current medical articles that address overviews of fibromuscular dysplasia.
Why we can use your help
FMD Chat needs support to achieve official nonprofit status which will
include formal IRS filing and joining the N.C. Center for Nonprofits
to ensure proper nonprofit management. Funding also immediately will
go toward the first annual FMD Chat Together social and educational
retreat for patients and their immediate family members to be held on
Sept. 8, 2012 and set the groundwork for the second annual retreat in
2013. Future FMD Chat projects include awarding grants to rare disease
research; leverage of funds through interest-based savings investment,
pursuit of grants and fundraising; the development of a more
sophisticated FMD Chat Website including additional resources for
patients, caregivers and healthcare providers; printing and
distribution of FMD Chat’s educational “What is FMD?” posters to
healthcare providers; development of additional educational resources
for patients, caregivers and healthcare providers including video and
print materials; translation of resources into foreign languages to
increase awareness and outreach effectiveness through FMD Chat’s own
website and strategic partnership with RareConnect, a joint effort of
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.
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Have a question?
If the info above does not help, you can ask the project creator directly.
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