Patient Organizations

Patient Organizations

Backpack Health

Backpack Health builds secure, innovative information tools to help people manage their health journey – including wellness, illnesses, injuries, and chronic health conditions. The Backpack Health mission is to make it easy for everyone to access, own and control their health information to support better health care and attain better health for themselves, their loved ones and their communities. Backpack Health provides a platform for organizations to engage patients, collect up-to-date data and build communities around the globe. To assure data protection for its users’ information, Backpack Health complies with the EU General Data Protection Regulation (GDPR), adheres to its data protection principles, and participates in the EU-U.S. and Swiss-U.S. Privacy Shield Frameworks. Learn more at www.backpackhealth.com.

Ryan’s Challenge

Introducing Ryan, a happy little boy who loves to play, and, like many two-year-olds, sometimes gets into mischief! When Ryan’s parents, Katie and Kyle, first noticed Ryan’s bruises, they thought it might be normal — from playing rough with his toys or his big sister, Reagan. When However, when Katie noticed he had several bruises on his spine from being in his stroller, she knew something was wrong.

Katie and Kyle spent weeks taking Ryan to a series of doctors’ appointments. Eventually a pediatric dermatologist recommended that Ryan undergo genetic testing to help determine the underlying issue. “It took some jumping through hoops,” Katie recalls.

On November 1, 2016, they received the results of the testing. Ryan was diagnosed with vascular Ehlers-Danlos syndrome (vEDS). From that moment on, their lives were changed. Everyday activities had to be considered more carefully. Changes were made, and precautions taken to safeguard against what would be minor injuries to most children but could be life threatening for Ryan.

Not ones to sit around and wait for a treatment, Katie and Kyle founded the 501c3 charity, Ryan’s Challenge. Ryan’s Challenge is dedicated to finding a cure for vEDS and to end patient suffering while working to raise awareness about the disease. Learn more at www.RyansChallenge.org.

Defy Foundation

By connecting researchers, communities, and business leaders, the DEFY Foundation raises research funding and community awareness in support of patients and families impacted by Vascular Ehlers Danlos Syndrome. Learn more at www.defy-foundation.org/.

Fight vEDS

FIGHT vEDS is a non-profit started by a vEDS patient and physician. The organization’s mission is to (1) provide patient-friendly information about vEDS, (2) help people quickly and affordably get tested for vEDS, and (3) connect vEDS patients with the right care team and patient support resources. Learn more at www.fightveds.org.

Annabelle’s Challenge

Annabelle’s Challenge is a UK charity for Vascular Ehlers-Danlos Syndrome. The charity raises funds for research, awareness campaigns and offers support and advice for people living with the condition. The charity also works closely with the NHS Ehlers-Danlos National Diagnostic Service with clinics in Sheffield and London. For more information visit https://www.annabelleschallenge.org/

Professional organizations

NORD

The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 250 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

NORD serves the rare disease community, including patients and their families, patient organizations, researchers, medical professionals, and companies developing orphan products. They also work closely with many government agencies, most notably the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). NORD programs are focused on improving the lives of individuals and families affected by rare diseases. Find out more at their website https://rarediseases.org/

Global Genes

Global genes is an organization made up of advocates, partners and collaborators who are working to eliminate the daily challenges for 1 in 10 people affected by rare disease. The grou seeks to empower patients, build communities & drive forward momentum for rare disease globally. Find out more at their website https://globalgenes.org/

EveryLife Foundation

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. The group believes it “can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases.” Learn more at https://everylifefoundation.org/

Ehlers Danlos Society

The Ehlers-Danlos Society is a nonprofit organization serving the global community to affect change and progress in the world of Ehlers-Danlos syndrome (EDS). Their mission is for all people with Ehlers-Danlos Syndrome to have their right for an early diagnosis, good management, respect, and recognition for their condition. The society is involved with:

Collaborative research
Organizing medical symposia and conferences
Bringing together and uniting the EDS community
Producing reliable, up-to-date medical literature
Building and uniting EDS support groups and charities from around the world
Giving HOPE to all those whose lives are affected by Ehlers-Danlos syndrome

Find out more at their website https://www.ehlers-danlos.com/.

NIH Genetic and Rare Diseases Information center

The Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases. Learn more at https://rarediseases.info.nih.gov/

QUICK
NAV