Last Updated: 19 May 2025
The Ehlers-Danlos Society
Third-Party Healthcare Professionals and Partners Policy
The Ehlers-Danlos Society (hereby referred to as The Society) collaborates with many independent healthcare professionals, clinics, institutes, businesses, and organizations. To ensure transparency, we maintain a clear policy and disclaimer regarding these third-party participants and how The Society provides their information for informational purposes only. The ways in which we uphold this policy are outlined below.
Individual Responsibility & Due Diligence
Individuals are responsible for selecting and vetting their own healthcare providers or resources. We encourage you to consider your personal needs, verify credentials, and, if needed, seek referrals when choosing a provider. The Society’s resources are intended to assist you but are not a replacement for gathering your own information, provider selection process, or guidance from medical team.
No Endorsement or Certification
Inclusion of any third-party healthcare professionals and partners on our platforms does not constitute an endorsement, recommendation, or certification by The Society, unless expressly stated.
Independent Third Parties
All listed professionals and partners are independent entities. The Society has no ownership or financial interest in third-party healthcare professionals and partners featured in our programs unless specified. They participate or are listed based on meeting program criteria or providing information, not through any joint business relationship, unless specified.
Contact Information on Third Parties Provided “As Is”
Details on our directories (e.g., specialties, contact info.) are submitted by the healthcare professionals, clinics, institutes, businesses, or organizations themselves and are not independently verified by The Society for accuracy or completeness. In other words, they are populated solely from information provided by those listed.
No Guarantee of Quality or Outcomes
The Society makes no guarantees or warranties (expressed or implied) about the advice, treatment, quality of care, or services that any listed healthcare professional, clinic, institute, business, or organization may provide. Participation in a Society program simply indicates they met the inclusion criteria — it is not a seal of approval on any aspect of their performance.
Third Party Views & Content
Any opinions, advice, or information expressed by external contributors are solely theirs and do not necessarily reflect the views of The Society. Unless specifically stated, The Society does not endorse the specific viewpoints, products, or services of our external contributors.
Handling Concerns or Feedback
If you have a concern about any listed provider or partner, you may inform The Society so we can note your feedback. Please refer to our contact information in the How to Contact Us section below for details. However, The Society is not a regulatory body and does not intervene in disputes.
In the interest of best protecting your data, please refrain from providing unsolicited personal health information or personal data in your message about concerns or feedback.
We advise that concerns about the care you received, or the conduct of a provider, be addressed directly with that healthcare professional or their organization, company, or institution, which can properly review the situation and handle any protected information involved. This ensures that issues are dealt with by those responsible for the provision of care. The Society may use feedback about third-party providers or groups to inform our internal review of program participation, but we do not mediate complaints.
The Ehlers-Danlos Society aims to be transparent about the limits of our role. This policy protects our community by setting clear expectations. We offer connections and information, but we do not supervise, certify, or guarantee third parties including healthcare professionals, clinics, institutes, businesses, or organizations.
Policy Review and Amendments
This policy will be reviewed annually, by the end of the first quarter (Q1), to ensure that it continues to meet the needs of The Society and its community.
How to Contact Us
If you have any questions about this policy, please do not hesitate to contact us.
Email us at: [email protected]
Call us: +1 410-670-7577 or +44 203 887 6132
Or write to us at: The Ehlers-Danlos Society Headquarters, 447 Broadway, 2nd FL #670, New York, NY, 10013, USA. or The Ehlers-Danlos Society Europe Office, Office 7, 35-37 Ludgate Hill, London, EC4M 7JN, United Kingdom
