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Living with Misophonia

How We Could Profit from a Non-Profit

The future face of a rare disorder

Wouldn’t it be great if there was one place we could go for honest, reliable help? Turns out, there is.

It’s called the National Organization for Rare Disorders. Founded in 1983, NORD is an umbrella non-profit that provides support and resources to patients with orphan disorders like misophonia.

 I thought it was time to investigate NORD further, so I contacted Mary Dunkle, the organization’s vice president for communications, to ask her a few questions about how our community might be able to come together to form a misophonia patient advocacy non-profit. Let this interview be an incentive to those of you with the right stuff.

 

What are the benefits of starting a non-profit patient organization that works on behalf of those with a rare disorder like misophonia?

 One of the biggest challenges of living with a rare disease is the sense of isolation. Non-profit patient organizations provide connection and an opportunity to share information with others experiencing the same challenges. In the world of rare diseases, they also provide very tangible and important services such as support (both financial and otherwise) for research, patient and physician education, advocacy on public policies, and assistance in accessing treatments. NORD does all of these things on a broad scale, addressing issues of shared concern. And we work in close partnership with disease-specific patient organizations.

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What are the personal qualities necessary to be the founder(s) of a non-profit patient organization?

 I have met so many admirable, truly wonderful people who had no preparation for becoming immersed in rare diseases but rose to the occasion and did whatever they needed to do to be good advocates for themselves or their loved ones. The first essential personal quality I have seen in the people who have successfully founded organizations is a desire to learn everything they can about their specific disease. It’s really true that “knowledge is power,” so that includes studying how research works, particularly with regard to the National Institutes of Health (NIH) and the Federal Drug Administration (FDA). Other key qualities include: good partnering and collaboration skills; a passion for their cause, but also an ability to be realistic and reasonable in their expectations; and a flexibility and "can-do" spirit that allows them to try things they never anticipated needing to do, such as setting up a website and fundraising.

 

 

What are the elements that have to be in place to successfully launch a non-profit patient organization?

 It isn't terribly difficult, but it requires patience, time and persistence. NORD provides links to information such as how to apply for 501c3 status. We also encourage people establishing organizations to avoid some of the common pitfalls. For instance, it's important to recruit a board with the right mix of skills and experience, rather than taking the easy route of enlisting family members or friends. Having a good, involved, supportive medical advisory board is really important, as is being willing to think beyond your specific disease and your specific issues to find common ground with other people with similar issues.

 

 

What are the keys to keeping a non-profit patient organization running smoothly and successfully?

Member/community engagement is important. Today's social media tools make that easier in some ways, but also more difficult in other ways because it's easier for people to connect with others without making any sort of commitment. Running an organization requires having members who are able and willing to commit to supporting various activities related to education, research, etc. Good support from medical experts is absolutely essential. The physicians and researchers working with rare diseases are amazing in this respect. They donate their time and expertise very generously to the disease-specific patient organizations as well as to NORD. None of us in the patient community could do what we do without their support.

 

 

What are the major obstacles facing non-profit patient organizations today and how can they be overcome?

One challenge is fragmentation. Partly because of today's communications tools, it's easy and tempting to start a new organization when there is already an existing one with a slightly different mission. In those cases, we always encourage people to find ways to work together; it only makes sense with limited resources and small patient populations. Another major challenge, although it's also an inspiration that helps drive progress, is the sense of urgency that comes with these disorders. So many people with rare diseases don't have an FDA-approved treatment yet, and patient organizations often feel as if the burden is on them to single-handedly develop a treatment or cure. There are incredibly important things they can do to help drive progress, but they can't do it alone. It has to be a partnership of patients, researchers and, in most cases, the pharmaceutical/biotech industry.

 

 

 

Wendy Aron is a professional writer who has suffered from misophonia since the age of 10.

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