Lipodystrophy United is a small, patient-led nonprofit working to support individuals and families affected by the rare disease lipodystrophy. As we expand our work—particularly through a new patient registry and research initiatives—we are beginning to form more structured partnerships with pharmaceutical companies. These collaborations are essential for our survival, as traditional funding sources in rare disease are incredibly limited.

We are dedicating significant time and expertise to pharmaceutical companies without formal agreements in place. As the primary patient organization in this space—with thousands of patient and caregiver contacts—we need clear contracts that recognize our value, protect our time, and ensure ethical, equitable collaboration.

We are seeking pro bono legal support from an attorney with expertise in nonprofit, healthcare contracting, corporate law, or data privacy. Our primary needs include:
• Drafting and reviewing consulting agreements with pharmaceutical and industry partners
• Creating a clear, protective Non-Disclosure Agreement (NDA) template
• Developing partnership contracts that outline responsibilities, deliverables, and funding terms
• Ensuring compliance with relevant data privacy regulations (e.g., HIPAA, GDPR) as we begin collecting patient-reported data through our registry