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2020.pdf

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Preview of 2020
🔗 Source: defeatadultrefsumeverywhere.org
📊 Size: 1.36 MB
👤 Author: Kristie DeMarco
⬇️ Downloads: 62

Summary

Global DARE Foundation had a successful first year, launching in October 2019 and achieving its goals for 2020, including improving treatment and care, advancing research, raising awareness, and collaborating with other organizations. The foundation established a Medical and Scientific Advisory Board, comprising leading researchers and clinicians in the field of Refsum Disease, and formed strategic partnerships with organizations such as the United Leukodystrophy Foundation and the National Organization for Rare Disorders. The foundation's president, Kristie DeMarco, joined the board of directors of the United Leukodystrophy Foundation and met with experts in the field, including Dr. Joe Hacia, who became the co-chair of the Medical and Scientific Advisory Board. The foundation participated in Rare Disease Week at Capitol Hill, met with the team at the Kennedy Krieger Institute, and raised over $10,000 in its first fundraiser. The foundation's board of directors and advisory board are committed to finding better therapeutic methods and ultimately a cure for Adult Refsum Disease.

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Description

Global DARE Foundation had a successful first year, launching in October 2019 and achieving its goals for 2020, including improving treatment and care,...

Technical Information

  • File Format: PDF
  • File Size: 1.36 MB
  • Pages: 9
  • Language: EN
  • Author: Kristie DeMarco
  • Total Downloads: 62
  • Last Updated: 4 hours ago

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