Lipodystrophy Connect is currently managed and supported by Invitae, as a result of the 2017 acquisition of the patient registry company, AltaVoice(formerly known as PatientCrossroads). After the loss of external funding, Lipodystrophy Connect dissolved the Governance Board. Invitae continues to make the program available to patients and stakeholders in the lipodystrophy community. 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.
History
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.
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.
We thank the following founding Governance Board members for their past contributions:
- David Araujo-VilarMD, PhD (Universidadede Santiago de Compostela)
- Kyle Brown (PatientCrossroads/Invitae)
- Rebecca Brown MD, M.H.Sc, (National Institute of Diabetes and Digestive and Kidney Diseases NIH)
- Andrea DunaifMD (Northwestern University, Feinberg School of Medicine)
- Abhimanyu Garg MD (University of Texas Southwestern Medical Center)
- TaisiaIsupovPharmD (AstraZeneca)
- ElifOral MD, FACE (University of Michigan)
- Vanessa Rangel Miller MS, MBA (PatientCrossroads/Invitae)
- David Savage PhD (University of Cambridge)
- AndraStratton (Lipodystrophy United)
