Patient-Led Communities Accelerating Rare Disease Research

March 2, 2021

The Rare As One Project,  supports 30 patient-led rare disease organizations that are working to develop and strengthen a collaborative research network in their disease area, convene their research community, and align around shared research priorities. While they come from many different backgrounds, they each bring their unique experience, talents, skills, and direct insights to their work leading their rare disease organization.

“In the past year, we have learned a tremendous amount from and alongside our grantees as we have worked in partnership to understand how we can optimize the power of community and develop the Rare As One Project — from the need for incubator programming, to how the network effect has allowed grantees to identify synergies across disease areas. Based on these learnings, we’re excited to expand the program — starting in March, we will be soliciting proposals for the Cycle 2 of the Rare As One grantee cohort. Read more about the learnings from the first year of the Rare As One Network and learn about the new Rare As One RFA.” – Rare as One

This past year Project 8p, Dup15q Alliance and Ring14USA  developed a commission — a one-of-a-kind collaboration that aims to solve for the commonalities across neurodevelopmental chromosome disorders in order to develop therapies. To launch the commission, 50 key opinion leaders were recruited to validate plans, onboarded scientific advisors, and engaged a strategic facilitator to exponentially increase capacity collectively. It’s exciting to imagine what the future holds for rare disease research when patient groups work together. Learn more about the Commission on Novel Technologies for Neurodevelopmental Copy Number Variants (CNVs).

Read more on the