Community Research Advisor

We are seeking a highly knowledgeable individual who has lived experience with the Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder s(HSD) to join our Medical and Scientific Board (MASB) review committee as a Community Advisor. Joining our Medical and Scientific Board as a Community Advisor offers a unique opportunity to contribute your expertise toward advancing EDS and HSD research and supporting initiatives.   

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.

• 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. 

Qualifications:  

• Lived experience with EDS or HSD,   
• Knowledge or background in research and healthcare, and involvement in EDS/HSD-related projects preferred.  

Preferred:  

• Prior experience serving on review committees, editorial boards, or similar evaluative roles within the medical or scientific community is advantageous.  
• Strong analytical skills, attention to detail, and the ability to critically evaluate complex scientific proposals.  
• Excellent communication skills to articulate constructive feedback and engage in collaborative discussions with fellow committee members.