Meet 4 Patient-Led Communities Accelerating Rare Disease Research

CZI offices illuminated for Rare Disease Day 2021.

Progress by the Numbers

  • All 30 organizations have expanded their networks, identifying key researchers in their disease areas;
  • 7 hosted international scientific meetings — with the remaining groups set to host meetings in 2021;
  • 9 developed a prioritized research agenda — with 7 more in progress.
  • 7 organizations developed major partnerships with biotech/pharmaceutical companies
  • 6 launched clinical registries
  • 1 launched a biobank
  • 1 launched a clinical center
  • 1 entered into a clinical trial
  • 7 developed a diversity, equity, and inclusion policy for their organization.

NEC Society

Jennifer Canvasser and her family. Photos courtesy of Jennifer Canvasser.

Project 8p

Project 8p founder Bina Shah hugging an 8p hero. Photo courtesy of Project 8p.
A few 8p heroes. Photos courtesy of Project 8p.

TANGO2 Research Foundation

The Morris family in 2019. Photo courtesy of Mike & Kasha Morris.
The TANGO2 community extends around the world — meet Harrison in Australia (left) and Mohammed in Saudi Arabia (right). Photos courtesy of TANGO2 Research Foundation.

Glut1 Deficiency Foundation

Glenna Steele and her daughter. Photo courtesy of Glenna Steele.
Photos from Glut1’s family conference in 2019. Images courtesy of Glut1 Deficiency Foundation.

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