About EDS and Advocacy
Health advocacy efforts generally promote health and access to care. If you or a family member has a rare disease such as Ehlers-Danlos syndrome (EDS), it may be helpful to learn more about such work and how you might get involved.
What is EDS?
EDS refers to a group of genetic disorders affecting the connective tissues that provide structure to the joints, skin, blood vessels, and other tissues and organs. Depending on the type of EDS a person has, disease symptoms can range from loose joints to life-threatening complications.
In addition to supporting and promoting patients’ healthcare rights, health advocates seek to improve the health and well-being of a community and to further policy initiatives that prioritize safe, available, and quality care.
Health advocacy goals include patient-centered care, safe and accessible medical systems, and greater reliance on the patient perspective in healthcare delivery and design.
On the policy front, advocates identify emerging public health issues that need to be addressed. They also collect data on current practices related to public health, monitor relevant legislation, and provide feedback on how certain issues affect communities. Advocates can also help to guide health policy reforms.
Advocates may act within organizations, such as public health associations or patient organizations. Advocacy is typically carried out using multimedia platforms, and via political lobbying, and community mobilization.
EDS advocacy groups
The Ehlers-Danlos Society supports collaborative research and education initiatives, awareness campaigns, advocacy, community building, and care for the patient community.
The society opened in 2020 an education and telementoring program for nurses who wish to better their ability to care for those with EDS and related disorders. As part of the program, participants will learn how to educate patients and advocate for them.
Another group, EDSers United, serves the EDS community through advocacy work that includes awareness campaigns, and programs that include help for patients at doctor appointments, tax services, support groups, and educational efforts.
There’s also the Zebra Network, which focuses on advocacy, awareness, and patient support. Patients have access to resources that support from other patients, and mentoring.
The National Organization for Rare Disorders (NORD) is a nonprofit patient advocacy organization. It works on behalf of people with rare diseases, including EDS, and the groups that serve them. In addition to organizing the U.S. portion of Rare Disease Day, NORD has advocated for healthcare services such as telehealth. This is remote healthcare via telecommunications, which can help people with EDS and other disorders get access to healthcare.
Through an initiative that seeks to establish a Rare Disease Advisory Council in every U.S. state, NORD is also working to empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families.
NORD’s “RareLaunch” training program hosted virtual workshops in 2020 aimed at empowering leaders — including caregivers, patients, and advocates — to start nonprofit organizations and research programs to help rare disease patients.
Eurordis is a similar advocacy group working for rare disease communities across Europe, and the organizer of Rare Disease Day.
May is Ehlers-Danlos Syndrome Awareness Month. Throughout the month, advocates play a key role in educating others about EDS.
There’s also Rare Disease Week on Capitol Hill. This year, the week runs July 19–22. It will bring together rare disease community members from across the U.S. Participants will learn about federal legislative issues, meet other advocates, and share their personal stories with legislators.
Elsewhere, discussions among scientists and patient advocacy groups about concerns of EDS and other patients regarding the current pandemic prompted a recent Rare Diseases Clinical Research Network survey online.
The federal government-run Rare Diseases Registry Program, called RaDaR, seeks to help patient advocacy groups with limited resources produce their own disease registries. Such registries are important in understanding disease development and characteristics.
The Ehlers-Danlos Society recently opened its new EDS and HSD (hypermobility spectrum disorder) global registry and repository, and welcomes these communities to help in advancing research and disease understanding.
Last updated: Feb. 10, 2021
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