Inspire unveils critical information on rare disease patients in NORD 2021

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

Posted: October 18, 2021 at 11:59 a.m. EDT|Update: 11 hours ago

ARLINGTON, Virginia., October 18, 2021 / PRNewswire / – Inspire, the vital healthcare community for millions of patients and caregivers, will present information and conclusions about patient journeys and experiences from two rare disease studies in the Virtual Poster Room, in the Patient Community Building in Rare Diseases category at this NORD summit on rare diseases and orphan products of the year, October 18-19, 2021.


The first study, “Motivations for Joining Rare Disease Online Support Communities”, conducted by Inspire in collaboration with Inspire community partners, the Sarcoidosis Research Foundation (FSR) and the Neurofibromatosis Network (NF Network). Through written reflections, 20 interviews and a survey of 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 more than 700,000 rare disease patients, with approximately 46,000 members affected by neurofibromatosis and more than 100,000 members reached by sarcoidosis. Brian loew, CEO of Inspire, adds: “I have been touched by the growth and engagement in our rare disease groups. Studies like these will help us continue to improve engagement while maintaining trust in the community, and through our research platform, we empower patients to share real-world knowledge with the community. medical research. ”

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

This poster received the highest rating and will include a short video presentation, along with the poster.

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

The second study, “Symptoms Around Menopause in Patients with Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders,” was conducted in collaboration with Inspire’s community partner, The Ehlers-Danlos Society . This study, comprising a survey of more than a thousand patients with one type of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD), attempted to better understand the changes in symptoms of EDS or HSD that can occur during and after menopause.

“The Ehlers-Danlos Company recognizes the lack of research on the important topic of menopause in people with types of ADS and HSD. We are grateful to have this opportunity to partner with Inspire to learn more about how this important life stage is being experienced by these people in our community, ”says Shani weber, director of community education.

About Inspire
Inspire is the essential partner of research and the medical community, providing actionable information for better care, treatment and outcomes. The knowledge of Inspire’s more than two million members provides a deep understanding of a myriad of conditions and their impact on patients. Inspire partners with over 100 patient rights organizations such as RSF, NF network, and The Ehlers-Danlos company. Visit us at Where

Richard Tsai

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SOURCE Inspire

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