Project Description


Inspire unveils critical rare disease patient insights at NORD 2021

Inspire and its advocacy partners present new real world insights and findings into neurofibromatosis, sarcoidosis, Ehlers-Danlos syndromes, and hypermobility spectrum disorders

Arlington, VA (October 18, 2021)–Inspire, the vital health community for millions of patients and caregivers, will present insights and findings from patient journeys and experiences from two rare disease studies in the virtual poster hall, in the Patient Community Building in Rare Diseases category at this year’s NORD Rare Diseases and Orphan Products Breakthrough Summit, October 18-19, 2021.

The first study, “Motivations for joining rare disease online support communities,” conducted by Inspire in collaboration with Inspire community partners, Foundation for Sarcoidosis Research (FSR) and Neurofibromatosis Network (NF Network). Through written reflections, 20 interviews, and a survey with 139 respondents, this study explored why rare disease patients and caregivers initially join online support communities versus why individuals stay in these communities over time.

Inspire supports over 700,000 patients affected by rare diseases, with about 46,000 members affected by neurofibromatosis and over 100,000 members affected by sarcoidosis. Brian Loew, CEO of Inspire, adds, “I’ve been humbled by the growth and engagement in our rare disease groups. Studies like these will help us continue to improve engagement while preserving trust in the community, and through our research platform we empower patients to share real world insights with the medical research community”.

According to Kim Bischoff, Executive Director, Neurofibromatosis Network, “We are thankful for our partnership with Inspire and look forward to continuing our work on the many opportunities to enhance the neurofibromatosis community that this research has identified.”

This poster received a top score and will include a short video presentation, along with the poster.

“We, at FSR, believe community and peer engagement are essential for navigating the challenges of living with a chronic rare disease, like sarcoidosis” says Mary McGowan, CEO of FSR.  “We are proud to partner with Inspire on the Stop Sarcoidosis Support Community to provide this much-needed space for those living with sarcoidosis to come together and share experiences. We look forward to exploring ways to expand our efforts together in support of the sarcoidosis community in the future.”

The second study, “Symptomatology around menopause in patients with Ehlers-Danlos Syndromes and hypermobility spectrum disorders,” was conducted in collaboration with Inspire community partner The Ehlers-Danlos Society. This study, including a survey of more than a thousand patients with a type of Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD), attempted to gain a deeper understanding of changes in EDS or HSD symptoms that may occur during and after menopause.

“The Ehlers-Danlos Society recognizes the lack of research on the important topic of menopause in those with types of EDS and HSD. We are grateful to have this opportunity to partner with Inspire to learn more about how this significant life stage is experienced by those in our community.” says ​​Shani Weber, Community Education Director.

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About Inspire

Inspire is the vital partner to the research and medical community, delivering actionable insights for better care, treatments and outcomes. Insights from Inspire’s over two million members offer deep understanding of myriad conditions and their impact on patients. Inspire partners with over a hundred patient advocacy organizations such as FSR, NF Network, and The Ehlers-Danlos Society. Visit us at or

About Foundation for Sarcoidosis Research

The Foundation for Sarcoidosis Research is the world’s leading international nonprofit organization dedicated to accelerating sarcoidosis research and to improving the lives of those with sarcoidosis. FSR has fostered over $5 million in sarcoidosis-specific research.

About Neurofibromatosis Network

The NF Network (formerly NF, Inc.) is a non-profit 501(c)(3) organization and was founded in 1988 by a group of people who were in some way affected by neurofibromatosis. We are the leading national organization advocating for federal funding for NF research and building and supporting NF communities.

About Ehlers-Danlos Society

The Ehlers-Danlos Society is a non-profit organization dedicated to saving and improving the lives of those affected by Ehlers-Danlos Syndrome, hypermobility spectrum disorders, and related conditions.