Global Genes is taking Week In RARE on the road to Kansas City, after having hosted this annual event in California for over 12 years. Moving the location annually will help make the event more accessible and equitable to the geographically diverse members of the rare disease community, and also create an opportunity for regional rare disease efforts to be highlighted. This year, Global Genes is honored to be working alongside RareKC as a regional partner and local host for this important event.
“Kansas City is not just known for its barbecue and jazz; it is a center for rare disease advocacy and innovation in diagnosis, care, and treatment,” said Charlene Son Rigby, CEO of Global Genes. “Week in RARE is a unique opportunity for members of the rare disease community to gather in one place to engage in discussions, share learnings, and exchange ideas on how to improve the health and lives of people living with a rare disease.”
The RARE Advocacy Summit will run September 26 and 27. This year’s theme is ‘There’s No Place Like Hope.’ People new to Global Genes and the rare disease community are often surprised at how much hope fills the air. The Summit is a homecoming for many of us which offers the closest thing we have to a roadmap leading to a better future. The Summit will be organized around three tracks: Empowering the RARE Individual, Community & Capacity Building, and Becoming a Research Ready Organization. John Crowley, president and CEO of the Biotechnology Innovation Organization [BIO] and founder and former executive chairman of Amicus Therapeutics, will deliver this year’s keynote address. His efforts to find a treatment for his children with Pompe disease were chronicled in the book The Cure by Geeta Anand and inspired the film Extraordinary Measures.
The RARE Champions of Hope awards will be held Friday, September 27. The awards recognize members of the rare disease community for their innovative approaches to advocacy, programming, and research to create a meaningful impact in the rare disease space. The nominees were announced on June 12th.
The Global Advocacy Alliance and RARE Corporate Alliance meetings will be held before the RARE Advocacy Summit. Information on joining either alliance or the benefits of membership can be found on the Global Genes website at the links posted above.
The RARE Health Equity Forum will conclude 2024 Week in RARE on Saturday, September 28. In its fourth year, the RARE Health Equity Forum continues to focus on the intersection of rare disease and health equity with an agenda built around creating systemic and organizational change. Attendees will walk away with actionable tools and strategic insights to advocate for a more inclusive rare disease community. The theme this year will be “Together in Equity, Driving Change”. Michele Wise Wright, Ph.D., Co-Founder, National Organization of African Americans with Cystic Fibrosis, will deliver the keynote address to kick off the forum.
“Week in RARE provides advocates a unique opportunity to participate in multiple events in one place to maximize their time, travel, and potential to gain benefits from their participation,” said Nicole Boice, Founder and Chief Mission Officer of Global Genes. “The program is designed not to just foster connections and stimulate ideas, but to enable attendees to walk away with actionable information they can use to drive progress for themselves and their communities.”
The agenda for this year’s Week in Rare can be found online at https://globalgenes.org/week-in-rare/. Information about submitting a poster, becoming an exhibitor, sponsorships, and discounted airfare through Delta and United can also be found on the page.
Sponsors of this year’s Week in Rare include Title Sponsor Amgen Rare Disease; Platinum Sponsor Genentech; Gold Sponsor UCB; Silver Sponsors Alexion, Chiesi Global Rare Diseases, Novartis, and Pfizer; Bronze Sponsors Acadia, Amicus, Biocryst, Blueprint Medicines, Jazz Pharmaceuticals, Mallinckrodt, Merck, Regeneron, Sanofi, Takeda, and Partner Sponsors Avidity Biosciences, Biogen, BridgeBio, Catalyst, GeneDX, Harmony Biosciences, Ipsen, Pharming, Spark, Travere, Ultragenyx Pharmaceuticals, and Vertex; Supporting Sponsors Biotechnology Innovation Organization, Insmed, and SpringWorks.
About Global Genes
Global Genes is a 501(c)(3) nonprofit rare disease patient advocacy organization dedicated to providing patients and advocates with a continuum of services to accelerate their path from early support and awareness through research readiness. Using a collaborative approach that involves biopharma, researchers and advocates with data as a central core, Global Genes also enables research and data collection through the RARE-X research program. Through this effort, Global Genes is building the largest collaborative patient-driven, open-data access initiative for rare diseases globally.
Media Contact:
Lauren Alford
Global Genes
949-248-7273
[email protected]
Media Contact
Lauren Alford, Global Genes, 4042168058, [email protected]
SOURCE Global Genes
