Public Advocacy
“There’s nobody that understands our conditions, because they’re so rare and they’re so complicated.
I wouldn’t be on hospice right now if it weren’t for a lot of things going on in my medical care due to not being listened to and not being believed.”
- Karen, age 22
COMPLICATED: A DOCUMENTARY
Complicated is a documentary about the heartbreaking experiences of families of children with EDS who struggle to get proper care amidst immense suffering. Created by Emmy- and Oscar-nominated filmmaker Andrew Abrahams, Complicated tells the story of multiple families and highlights the work we are doing at the Norris lab as the hope for families like them all over the world.
Complicated premiered at Slamdance, a Sundance Film Festival in late Feburary 2025. We are working with the producers to promote the film as we believe it is a compelling and much needed look at the all-too-common experiences of patients with EDS and their families.
Increasing Public Awareness, Together
In an effort to elevate the national conversation around EDS, the Norris lab works with local and national news organizations, podcasts, book authors, and other media outlets to produce and publish compelling and scientifically accurate content about EDS and its related comorbidities for the public.
Health Communication Platforms
Dr. Cortney Gensemer is well-known for her educational Instagram account @cortdoesscience, where she provides accessible and informative content about EDS to her more than 15,000 followers.
Providing access to credible information grounded in peer-reviewed research empowers patients to become informed advocates for their own healthcare, combatting medical misinformation and equipping patients to engage in meaningful conversations with their healthcare providers and actively participate in their care.
