Frequently Asked Questions

The Andrea Foundation For EDS is a nonprofit organization focused on raising awareness, providing education and resources, encouraging advocacy, building community, and supporting individuals and families affected by Ehlers-Danlos syndromes.

The Foundation was inspired by our founder’s 16-year journey to find answers for her daughter, who was born with hypermobile Ehlers-Danlos syndrome (hEDS). That personal journey became a larger mission to help individuals and families affected by EDS feel seen, heard, informed, and less alone.

No. Our founder’s personal story began with her daughter’s journey with hypermobile Ehlers-Danlos syndrome, but the mission of The Andrea Foundation For EDS embraces the broader Ehlers-Danlos syndrome community.

No. The Foundation provides educational and awareness information only. We do not diagnose medical conditions, recommend individual treatment, or replace consultation with qualified healthcare professionals.

You can help by raising awareness, sharing our mission, following and sharing our social media content, expressing interest in volunteering, sharing your story when opportunities are available, partnering with the Foundation, or supporting our mission financially. Visit our Get Involved page to learn more.

Visit our Donate page and use the secure donation option provided there. Thank you for supporting the mission of The Andrea Foundation For EDS.

Email: info@theandreafoundationforeds.org — or visit our Contact page and complete the contact form.

Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders. Because connective tissue is found throughout the body, EDS can affect people in many different ways including joints, skin, heart, gut, nerves, and blood vessels. There are 13 recognized types of EDS. The most common type is hypermobile EDS (hEDS). EDS affects an estimated one in five thousand people in the United States.

Hypermobile Ehlers-Danlos Syndrome — commonly called hEDS — is the most common type of EDS. Generalized joint hypermobility is an important feature of hEDS along with chronic widespread pain, fatigue, and other symptoms that can vary from person to person. The Andrea Foundation For EDS has a personal connection to hEDS because our founder’s daughter lives with it. Every person’s situation is different — please discuss any concerns with a qualified healthcare professional.

The Invisible Disease is a free story series produced by The Andrea Foundation For EDS (TAFFEDS) following a character named Ana from birth through her journey with hypermobile Ehlers-Danlos Syndrome. The series covers the diagnostic journey, medical dismissal, school challenges, family impact, and the long search for answers that millions of EDS patients experience. All episodes are free on YouTube at youtube.com/@AndreaFoundationForEDS and on TikTok at tiktok.com/@andreafoundationforeds.

The EDS Awareness Guide is a comprehensive plain-language educational resource written by The Andrea Foundation For EDS (TAFFEDS) for EDS patients, families, and caregivers. It covers all 13 EDS types, a complete symptom breakdown, how to navigate the diagnostic journey, how to advocate with healthcare professionals, and how to support children with EDS in school settings. Available as a digital download for $12.99. Every purchase directly supports the foundation’s nonprofit mission.

The average EDS patient waits approximately fifteen years for a correct diagnosis. This happens because EDS symptoms overlap with many other conditions, many healthcare professionals receive limited EDS training, and EDS affects multiple body systems making it difficult to recognize the full pattern. Women with EDS wait even longer on average — approximately sixteen years compared to four years for men with similar symptoms. The Andrea Foundation For EDS works to raise awareness to help reduce this diagnostic delay.

EDS Awareness Month is observed every May. During May the global EDS community and patient advocacy organizations work to raise public awareness of Ehlers-Danlos Syndrome through social media campaigns, educational initiatives, and community engagement. The Andrea Foundation For EDS participates every year through digital awareness campaigns across our social media platforms. Follow us on TikTok, YouTube, Facebook, Instagram, and X to join the conversation every May.

Finding healthcare professionals familiar with EDS can be challenging. The Ehlers-Danlos Society maintains a healthcare directory at ehlers-danlos.com which can help you find clinicians with EDS experience. We also encourage you to speak with your current healthcare providers and bring educational materials about EDS to your appointments. The Andrea Foundation For EDS does not provide medical referrals but encourages families to use trusted resources like the EDS Society, NIH GARD, and NORD when searching for specialists.

The Andrea Foundation For EDS (TAFFEDS) is a 501(c)(3) nonprofit organization funded through individual donations, sales of the EDS Awareness Guide, corporate grants, foundation grants, and fundraising campaigns including our annual Christmas Hope Campaign. Since its founding in 2016 the foundation has operated primarily through the personal funding of our founder while rebuilding its capacity for the next phase of growth. We are actively pursuing grant funding to expand our programs and reach more EDS families across the United States.