NW Rare Disease Coalition: Payer Forum, Seattle Rare Disease Fair, and Community Picnic

The Northwest Rare Disease Coalition is proud to host three days of rare disease-focused discussion bringing together patients, advocates, families, researchers, and clinicians from across the country.

Payer Forum – Thursday, May 30th located at Seattle Children’s Research Institute Jack R. MacDonald Building in the Soundgarden Room: 1900 9th Avenue, Seattle

All stakeholders involved in rare diseases are crucial in accelerating innovation, research, and policy. In collaborating we can reduce cost, be efficient, and save lives. At the Payer Forum, we’ll amplify the important role of insurance payers in the healthcare delivery ecosystem. We’ll engage our payer colleagues in a rounding discussion about the implementation of genetic testing and cell and gene therapy with through the lens of patient experience.

Seattle Rare Disease Fair – Friday, May 31st located at Seattle Children’s Research Institute Building Cure: 1920 Terry Ave, Seattle

The Seattle Rare Disease Fair started in 2017. The goal was to unite all stakeholders in the rare disease community: payers, legislators, researchers, pharma, biotech, patients and their families. We’ll discuss actions to move forward on the most pressing needs to the rare disease community and the policy considerations surrounding these efforts. This year, topics will include:

  • Getting more patients diagnosed and ending the diagnostic odyssey
  • Complex care coordination
  • Patient organization engagement in healthcare access issues and understanding pathways to develop new treatments
  • Cell and gene therapy, whole genome sequencing, and the next frontiers in new medical discovery

Community Picnic – Saturday, June 1st at 12600 84th Ave, Kirkland

The NW Rare Disease Coalition is hosting the Rare Disease/Medically Complex/Special Needs Picnic. This will be a fun day for patients and their families. All are welcome! We will have a petting zoo, balloons, face painting, raffle baskets, music, and popcorn.