Our History
Since our inception in 2012, Lipodystrophy United has made accomplishments that have helped to build a supportive community of patients, improve the understanding of the burden of living with lipodystrophy, and expand awareness.
Starting Out
LU was founded in 2012 by a small group of individuals living with lipodystrophy who connected on social media and noted that their experience was not reflected in any accessible public information and growing research in the study of the disease was not accessible to the general public and didn’t directly reflect the true burden of the disease. Recognizing the challenges patients face, Lipodystrophy United (LU) was founded with a clear mission: to serve as a bridge between the patient and research communities.
As is common in rare diseases, they had to learn from scratch how to develop a nonprofit from nuts to bolts, become experts in the disease, build the community and create and execute a plan to improve diagnosis and disease awareness. They secured official 501(c)3 status.
They jumped headfirst into advocacy, driven by the fact that a treatment, a recombinant human leptin analog called metreleptin, was already in development clinical trials had been ongoing for patients with generalized lipodystrophy for many years, and trials for partial lipodystrophy were in the early stages. The existing industry and regulatory involvement provided unique opportunities and additional learning challenges.
Lipodystrophy United Landmarks
Patient Advisory Board
The Lipodystrophy Advisory Board was founded.
Getting Organized
Lipodystrophy United was founded as a 501(c)(3) designated non-profit organization.
Raising Awareness
Began to educate stakeholders, including the FDA and drug companies
Inaugural Proclamation
The 1st Annual World Lipodystrophy Day is now designated as March 31st each year. Additionally, quality of life studies begin enrollment.
Making Our Voices Heard
Lipodystrophy United led a patient listening sesion with the FDA. This is the most direct way patient organizations can educate federal regulators on the burden of the disease.
Enabling New Scientific Discovery
Lipodystrophy United co-hosted the International Scientific Conference on Lipodystrophy: A Global Call to Action.
Contributing to Knowledge
Lipodystrophy United participates in publishing the results of our natural history study and patient registry.
Leading the Conversation
The Global Lipodystrophy Leaders Consortium was formed.
Ongoing Advocacy Direction
- Tea with LU was launched
- Launched LU Lunch and Learn Program
- LU hosted a booth at ENDO
- LU published consensus guidelines
Event Leadership
Hosted the Building Bridges and Solving the Puzzle Symposium
Reinforcing the Foundation
- Expanded Tea with LU into a consistent, trusted, community support program.
- Collected patient-driven survey data on symptoms, burden, and research priorities
- Strengthened global collaborations with Global Lipodystrophy Leaders Forum
- Formalized a Scientific Advisory Board (SAB) with defined priorities, the Board Charter, Conflict of Interest Statements, and confidentiatlity assurances.
Telling the Story
Launched research "Voices of LU" program to gather insights into the burden of the disease and treatment.
About Us
Dedicated to serving the lipodystrophy community
Our Story
When patients become the experts
Our Path
From then until now – See how far we’ve come!
The News
Check out our recent media appearances
Fostering Unity and Collaboration with Our Dedicated Partners
