Community Research Advisor

Save to Favorites

We are seeking a highly knowledgeable individual who has lived experience with the Ehlers-Danlos s yndrome (EDS) or hypermobi lity spectrum disorder s(HSD) to join our Medical and Scientific Board (MASB) review committee as a Community Advisor. As a Community Advisor, you will play a crucial role in providing a lived experience perspective on all topics that are addressed by our MASB that relate to the scientific and medical priorities of The Ehlers-Danlos Society, assessing research proposals related to EDS and HSD research and initiatives.

Key Responsibilities/Essential Functions

• Lived Experience: Utilize your extensive expertise in Ehlers-Danlos syndromes or hypermobility spectrum disorders to bring insight, feedback, and opinion to all the work covered by this board.   
• Peer Review: Alongside the other MASB members, conduct comprehensive reviews of research data access applications to our DICE Registry. Provide insightful and constructive feedback on merit, methodology, innovation, and relevance to EDS and HSD. 
• Collaborative Assessment: Engage in discussions to share your insights, contribute to decision-making processes, and assist in identifying projects with the greatest potential for advancing EDS and HSD knowledge, diagnosis, treatment, or patient care. 
• Maintain Confidentiality: Uphold strict confidentiality regarding research submissions and discussions, ensuring the integrity of the review process. 
• Adherence to Guidelines: Follow established evaluation criteria and guidelines provided by the committee to ensure fairness, consistency, and adherence to ethical standards. 
• You will be attending two face to face meetings per year and four virtual meetings.