Vision

Our vision is accurate diagnoses, quality care, effective treatment, and one day, a cure for lipodystrophy.

Goals

1. 1.Establish and Formalize Research Initiatives with the Collaboration of Global Lipodystrophy Experts by, 1.) completing the registry questionnaire by the end of the year with Validated Patient Reported Outcomes Questionnaires, 2.) Engage with the science committee in monthly community programming via Lunch and Learn sessions. .
2. 2.Establish and Advance Advocacy Initiatives to Amplify the Patient/Caregiver Voice and Drive Systemic Change in Lipodystrophy Care. 1.) Hold an FDA Listening Session to highlight the unmet needs and challenges the lipodystrophy community faces. 2.) Attend a multitude of medical conferences to educate researchers and Health Care Professionals on the burden of the disease.
3. 3.Financial Sustainability: Diversify revenue streams through: Expanded fundraising efforts. Strategic partnerships with sponsors and donors. New merchandise or campaign ideas.