2020 Refsum Advocacy plan

Treatment & Care

  • Establish and mature a Medical & Scientific Advisory Board.

  • Research patient registries for deployment in 2020 to collect patient data for research.

  • Conduct Research on Phytanic Acid in Foods

  • Drive forward treatment guidelines for Adult Refsum Disease

  • Define and prioritize research priorities

Raising Awareness

  • Mature a Refsum Website

  • Create a Refsum video showing the impact of Refsum Disease on patients.

  • Develop and mature social media sites

  • Find more patients through outreach efforts with clinicians at medical facilities and on social medial platforms.

  • Run two to three fundraisers in 2020 with the goal of raising $25,000.


  • Establish and mature a Foundation

  • Create a Collaborative Network of Patients, Clinicians, Researchers and Supporters to drive Refsum Advocacy

  • Conduct a 2020 Refsum Conference connecting Patients, Clinicians Researchers, and Supporters

  • Partner with other foundations to find synergies.  

Contact us

P.O.Box 865

Windham, Maine 04062

United States


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