Name: Sharon Rose Nissley

Organizations you represent: Klippel-Feil Syndrome Freedom, Founder

What led you to the rare disease community: I was diagnosed with Klippel-Feil syndrome in 2009 at 38 years old, after a lifetime of puzzling issues. I had been diagnosed with a type of Vasculitis and an undiagnosed bleeding condition in my mid 20’s. After the KFS diagnosis, I was diagnosed with Cervical Dystonia and Ehlers-Danlos syndrome. As a rare patient, I was looking for ways to connect and find solutions for myself and others in the rare disease community. I connected with Global Genes on Facebook in 2011 and powerhouses like Stephanie Fischer on Twitter shortly thereafter.

What do you think are the areas that are lacking in the community (specific to your org or in general) / What are some of the pain points? We are advocates in the rare disease landscape to help those who have a rare disease. We’ve all seen the important statistic that 50% of those who have a rare disease are children. The other 50% are adults. Therefore, capturing the adult patient’s first-hand experience, perspective, and knowledge must not be an afterthought.

The greater rare disease community must equally include and focus on all ages in everything we do.

Adults who have rare diseases must be an active part of discussions and solutions. We must be welcomed and represented in rare projects, studies, initiatives, events, in promo, and as speakers or panelists. We must listen and find ways to embrace adult patients, whether it’s providing access to rare events physically and/or financially, to creating resources for adults who have a rare disease.

This is long overdue.

What are your areas of expertise? I’ve been a part of the rare disease arena for over 11 years working with various rare disease organizations and projects as a volunteer. As a person who has rare diseases, I have 50 years of experience. My main passion is to shift the rare space to include adults who have a rare disease in all that we do.

I thrive when brainstorming, finding solutions, and seeing projects through.

I volunteer for Klippel-Feil syndrome Freedom and it’s three support groups for parents, teens, and adults. I create digital images that share facts about Klippel-Feil syndrome and other rare disease topics, to advocate visually.

I continue to work part-time as a director or interior design at an architectural firm. I also paint and create as an artist. I am more limited these days due to rare disease, but I’ve adapted along the way.

Sharon Rose Nissley

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