Patient-Partnered Collaborations & Rare As One Network
Chan Zuckerberg Initiative
Two vehicles, neither currently accepting applications. Patient-Partnered Collaborations fund teams pairing a patient-led organization with research labs at $2M over four years; the rare neurodegenerative and rare inflammatory pediatric disease RFAs have both closed. Rare As One gives 5-year capacity-building grants to patient-led rare disease organizations; Cycle 3 closed Feb 22, 2024. As of Aug 28, 2026 CZI's funding page lists all 28 of its opportunities as closed. A fourth Rare As One cycle was announced in June 2026 for “this fall” — reported as likely October, with no official date and no RFA page yet — scoped to rare pulmonary and immune diseases and rare cancers. The network has backed 94 patient-led organizations and CZI puts more than $150M into rare disease work across the cycles.
Nothing to apply to right now. Rare As One Cycle 3 covered inborn errors of metabolism, which was BTHS-adjacent, but the announced round 4 scope — rare pulmonary and immune diseases and rare cancers — does not cover Barth syndrome except through a strained neutropenia framing. Watch it for the cycle after, and for any PPC RFA whose disease scope reaches mitochondrial or cardiac disease, since BSF plus a TAFAZZIN lab is exactly the team shape PPC funds.
Rare As One: patient-led advocacy organizations (BSF would be the applicant). Patient-Partnered Collaborations: joint teams of an advocacy organization and academic labs.
Nothing is open. New RFAs post to CZI's science funding page and are announced to its science mailing list, which is the only reliable way to catch a window — the round 4 RFA page does not exist yet.
/grants/patient-partnered-collaborations-and-rare-as-one-network/
Last updated August 28, 2026 · Suggest an update to this entry