Lipodystrophy United
Drafting an agreement on Becoming an Umbrella Organization with multiple global partners
Unite U.S. and Canadian foundations to streamline lipodystrophy advocacy, funding, and support.
Posted July 21, 2025
Background & Context
There are many country specific advocacy organizations who are all trying to accomplish the same things. We have agreed with three of those: Canada, Israel, and Australia that we should all be umbrella organizations of our organization, Lipodystrophy United. This way, we can have one central place for people all over the world to access our information, rather than our work being siloed. We need to figure out the best way to accomplish this.
Immediate Problem
Should we merge or have affiliates?
Work & Deliverables
Scope of Legal Support Needed
1. Legal Review & Structuring
• Advise on the most appropriate legal structure:
• Merger, fiscal sponsorship, affiliate model, or international division.
• Identify legal risks, benefits, and obligations for both LU (U.S.) and LU Canada.
2. Drafting & Finalizing Legal Agreements
• Refine and finalize the Memorandum of Understanding (MOU).
3. Regulatory Compliance
• Ensure compliance with:
• U.S. nonprofit law (IRS regulations, state filing obligations)
• Canadian nonprofit and charitable law (CRA registration rules)
• Cross-border fundraising rules
• Data privacy laws (HIPAA, PIPEDA)
Preparation Phase
- Schedule an intro call with the team to talk more about the project.
Collaboration Phase
- Review draft contract for the organizations
- Advise on legal steps to move forward with the contract.
Wrap Up
- Explain outcome and further options to client.
Lipodystrophy United
Since our inception in 2012, Lipodystrophy United (LU) 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. LU built a unified patient community as well as trusted relationships with the medical community and other important stakeholders such as pharmaceutical companies developing treatments. This progress led to advancement in research and treatments. Our mission is to increase awareness and understanding of lipodystrophy among the patient community, medical professionals and stakeholders. Lipodystrophy United aims to be the leading resource in the United States for patients and healthcare professionals dealing with lipodystrophy, providing clear, actionable information and support for managing the condition.
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Lipodystrophy United
Since our inception in 2012, Lipodystrophy United (LU) 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. LU built a unified patient community as well as trusted relationships with the medical community and other important stakeholders such as pharmaceutical companies developing treatments. This progress led to advancement in research and treatments. Our mission is to increase awareness and understanding of lipodystrophy among the patient community, medical professionals and stakeholders. Lipodystrophy United aims to be the leading resource in the United States for patients and healthcare professionals dealing with lipodystrophy, providing clear, actionable information and support for managing the condition.