Early in 2011, a group of patients and caregivers in the Lipodystrophy community began discussing the need for disease awareness and information that would connect and serve the needs of the entire community.
At that time the group founded, Lipodystrophy United (LU). What LU envisioned was a central hub that would bring together those living with the disease, along with their families, friends and caregivers, to access disease information and connect them with medical research, clinical care, clinical trials and each other. At the same time, it would also be a resource for researchers and industries with an interest in Lipodystrophy, allowing access to aggregated, de-identified information provided by patients and their families—information that could prove vital to advances in care and treatment. This resource, a breakthrough multidirectional information portal for Lipodystrophy would help connect these stakeholders, while providing them with resources never before available in one place. Today, the result of this endeavor is Lipodystrophy Connect, a robust and cutting-edge website and registry.
Who We Are
As its name implies, Lipodystrophy Connect represents the coming together of a wide range of entities and individuals who recognize the value in pooling their combined expertise and information. The Governing Board of Lipodystrophy Connect comes from leaders in the non-profit sector, government agencies and academic institutions.
Regardless of their individual backgrounds, the thought leaders of Lipodystrophy Connect share a common goal to increase the community’s ability to help one another through improved communication, and by doing so, to help the millions of people affected by Lipodystrophy.
LD Connect Governance Board
As its name implies, Lipodystrophy Connect represents the coming together of a wide range of entities and individuals who recognize the value in pooling their combined expertise and information. The Governance Board, comprised of members from advocacy, research institutions, government, industry and international stakeholders, provides oversight for LD Connect. The Governance Board provides guidance for day-to-day management of the Registry, develops surveys, determines the access and publication policies and makes decisions about policies and procedures that govern the LD Connect registry. Current members:
- David Araujo-Vilar MD, PhD (Universidade de Santiago de Compostela)
- Kyle Brown (PatientCrossroads)
- Rebecca Brown MD, M.H.Sc, (National Institute of Diabetes and Digestive and Kidney Diseases NIH)
- Andrea Dunaif MD (Northwestern University, Feinberg School of Medicine)
- Abhimanyu Garg MD (University of Texas Southwestern Medical Center)
- Taisia Isupov PharmD (AstraZeneca)
- Elif Oral MD, FACE (University of Michigan)
- Vanessa Rangel Miller MS, MBA (PatientCrossroads)
- David Savage PhD (University of Cambridge)
Andra Stratton (Lipodystrophy United)
The information provided on Lipodystrophy Connect has been developed with the review, direction and advice from the Governing Board as well as physicians and researchers all over the world. Advisors contribute to Lipodystrophy Connect in many areas including reviewing educational materials, providing programmatic direction, advising on processes and procedures, and facilitating opportunities for outreach and collaboration.
The operations team behind this incredible resource continues to refine and perfect the site so that it evolves to best serve the needs of the entire community. We are open to your suggestions and feedback.