programming
Examples:
- Panel and Round Table Discussion: Major conferences including Government, Industry, Academia and Patient organizations - NORD, Chan Zuckerberg Initiative, World Orphan Drug Conference
- Clinical Trials: Target Cancer TRACK program, ie. remote participation
- Academia/Patient Advocacy Collaboration: Fred Hutch TRACER program
- Celebrity/Properties partnerships: HIV/Magic Johnson; Diabetes/Laila Ali; Cardiology/Larry King; Osteoporosis/Julie Andrew; Allergies/MLB;
- Inaugural Scientific Conferences — Led by patient organizations
- Patient Research Consortiums — NORD Rare Cancer Coalition; GI Cancers Alliance
- Strategic Planning: one, five and ten year plans
- Board Creation: Directors, Medical/Scientific; Patient Advocacy
- Branding: Rare Cancer Day launch/USA Congressional Cancer Caucus annual resolution of support: https://kelly.house.gov/media/press-releases/kelly-colleagues-introduce-resolution-recognize-rare-cancer-day ; https://kelly.house.gov/media/press-releases/kelly-house-cancer-caucus-co-chairs-introduce-resolution-recognize-september
- Educational programs: Articles; Social Media; Live interviews/speeches; podcasts
Publications and Honors:
- National Organization Rare Disorders (NORD): Abby Myer Leadership Award: https://rarediseases.org/get-involved/rare-cancer-coalition/accomplishments/
- CZI: Inaugural cancer foundation to included in the the Rare As One Network
- Pediatric Brain Cancer Collaboration Journal: Co-published with Day One pharma and multiple advocacy foundations: https://www.dayonebio.com/patients/resources/
- Fred Hutch TRACER: Semi Annual Scientific Meetings publications: https://www.fredhutch.org/en/news/center-news/2024/02/fred-hutch-launches-rare-cancer-research-effort.html ; https://www.fredhutch.org/en/news/center-news/2024/02/fred-hutch-launches-rare-cancer-research-effort.html
- USA Congressional Cancer Caucus: Rare Cancer Day Resolutions – 2023/2024
- Global Genes: https://globalgenes.org/raredaily/rare-leader-john-hopper-president-fibrolamellar-cancer-foundation/
