EDS-Supporting Nonprofit Community and Advocacy Groups

There are several nonprofits supporting EDS. Each has varying types of focus and programs. Find one that suits your needs best. Here’s a list of active EDS advocacy organizations, communities, and support groups:

1. The Ehlers-Danlos Society: A global organization providing research, education, and patient support, including online support groups and conferences.
2. Bobby Jones Chiari & Syringomyelia Foundation (BJCSF): Focused on raising awareness and research for neurological conditions like Chiari Malformation and related disorders, which often co-occur with EDS.
3. EDS UK: A UK-based charity offering support and information for those affected by EDS, providing resources, support groups, and events for the community.
4. EDS Wellness: A nonprofit that provides health education, support programs, and wellness resources for people with EDS, focusing on integrative health approaches.
5. Chronic Pain Partners – EDS Awareness: A nonprofit raising awareness for EDS and offering virtual support groups, educational webinars, and resources for patients and caregivers.
6. Rare Disease Legislative Advocates (RDLA): While not EDS-specific, this organization empowers rare disease patients, including those with EDS, to engage in legislative advocacy for better healthcare policies.
7. Mast Cell Disease Society: Supporting those with mast cell activation disorders (MCAS) commonly seen in EDS patients, this organization offers education, research, and advocacy.
8. Hypermobility Syndromes Association (HMSA): A UK-based group providing education and support for people with hypermobility spectrum disorders, including EDS.
9. Dysautonomia International: While focused on autonomic nervous system disorders like POTS, this organization frequently collaborates with EDS advocacy as the two conditions often overlap.

Learn Why and How to Advocate

Your voice matters! You can advocate on behalf of patients living with these conditions around the United States in several ways.  You have the power to effect real policy change that will improve the lives of patients and families living with Ehlers-Danlos syndrome (EDS) and many related disorders! This toolkit describes why it’s important to be an advocate, what you need to know to advocate effectively, and how you can do it so you make a real difference!

Why Be an Advocate?

• Direct contact with your elected representatives and their staff is a big deal. Over 90% of Congressional staffers report direct contact with constituents as influencing their decisions when discussing policy with elected officials.
• That direct contact can look different.  Maybe it’s a well-written email/letter, or a personal meeting with legislative staff.  Maybe you participate in a coordinated social media campaign with similar patients and family members.  Or, maybe you simply attend a local event hosted by your elected official to introduce yourself and your cause…
• No matter what your advocacy looks like, it is important!  An estimated 1 in 5,000 are impacted by EDS which is likely a gross underestimation. Experts at the MUSC Norris Lab believe it is more likely to be 1 in every 500, but the research is still out. But the condition is still poorly understood. The only treatment options available are either invasive and complex surgeries, or the piece-by-piece management of symptoms when the root cause can’t be identified.  All of this makes getting insurance coverage difficult and then, even if it is covered, it can still end up being expensive.

Because of this, EDS and related disorders represent a significant financial drain on your wallet and our US healthcare system. 

Costs of EDS for Patients & Their Families

(Shared from Dr. Cortney Gensemer’s insights- subscribe to her Substack, Life and Science with Cortney)…

“The Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) present significant health challenges and are lifelong chronic illnesses with no FDA-approved treatments or therapies. While the clinical aspects of these conditions are well-documented, the economic impact has been unclear. A new study, published in Frontiers in Public Health, tackles this question. Summarized below, the authors investigated the cost burden of EDS and HSD on patients with commercial insurance plans in the United States. Using a large healthcare database called MarketScan® for 2021, researchers were able to identify patients with EDS or hypermobility by looking at specific diagnosis codes used by doctors. MarketScan® contains detailed information about medical costs and treatments for millions of people who have commercial health insurance in the United States. Researchers then compared these patients to similar people without EDS or hypermobility to see how much more they spent on healthcare during the year. They also looked at other health conditions that might increase costs. The study included 5,113 adult EDS patients, 4,880 adult HSD patients, 1,059 child EDS patients, and 2,427 child HSD patients.

 

Findings revealed that:

• Adult EDS patients: Mean total costs of $32,800
• Adult HSD patients: Mean total costs of $22,100
• Child EDS patients: Mean total costs of $21,600
• Child HSD patients: Mean total costs of $15,000

When compared to non-EDS/HSD patients:

• Adult EDS patients: Mean excess costs of $21,100
• Adult HSD patients: Mean excess costs of $11,600
• Child EDS patients: Mean excess costs of $17,000
• Child HSD patients: Mean excess costs of $11,000

These excess costs were consistent across various types of medical expenses, including inpatient, outpatient, emergency department, and pharmaceutical claims. Excess costs refer to the additional healthcare expenses incurred by patients with a specific condition (like EDS or HSD) compared to individuals without that condition.

Impact of Comorbid Conditions
Patients with EDS and HSD often had other health conditions that further increased their healthcare costs. The presence of comorbid conditions was common:

• Adults:
  • 87.3% of EDS patients and 75.6% of HSD patients had one or more comorbid conditions.
  • 36.0% of EDS patients and 21.4% of HSD patients had three or more comorbid conditions.
• Children:
  • 72.8% of EDS patients and 60.7% of HSD patients had one or more comorbid conditions.
  • 21.4% of EDS patients and 11.9% of HSD patients had three or more comorbid conditions.

Types of Comorbid Conditions

The study specifically examined several common comorbid conditions, which were linked to higher healthcare costs:

• Gastrointestinal conditions: Patients with these conditions had more than double the healthcare costs compared to those without.
• Dysautonomia (including POTS), mast cell disorders, depression/anxiety, musculoskeletal issues, and neurological conditions: All contributed significantly to higher costs.

Vascular Type EDS

Patients with vascular type EDS, known for more severe and life-threatening complications, had even higher healthcare costs compared to those with other types of EDS. For example, the mean costs for patients with vascular EDS were higher across most categories, reflecting the need for more intensive and frequent medical interventions.

 

A Review of Healthcare Costs for Hypermobile EDS vs. HSD

The study also compared costs between patients with hypermobile EDS (hEDS) and those with HSD. It found that:

• Patients with hEDS generally incurred higher healthcare costs than those with HSD, except for inpatient claims, which were approximately the same.
• This may suggest that individuals with hEDS might have more severe clinical presentations, requiring more extensive healthcare services. However, more studies are needed to determine differences in severity between hEDS and HSD.

Overall, the study highlights the substantial economic burden of EDS and HSD. These higher costs emphasize the need for rapid diagnosis, access to appropriate treatments, and increased research funding. Keeping in mind that these costs don’t reflect things that patients may pay for out of pocket, including over-the-counter medications, providers who don’t take insurance, braces and mobility aids not covered by insurance, travel costs associated with care, and lost income from lost work for patients and caregivers.”

– Thank you for your wisdom Dr. Gensemer from all of us. 

Changing policy through your advocacy efforts is the only way to advance research in the field, increase health care access, and improve long-term outcomes for patients and their loved ones impacted. Please know…Your voice matters.

One of our advisory board members Christie Cox shared her advocacy story recently with the health advocacy nonprofit Patients Rising.