Chan Zuckerberg Initiative Pledges $13.5 Million to Fund Rare Disease Research

The Chan Zuckerberg Initiative (CZI), a philanthropic company established by Facebook CEO Mark Zuckerberg and his wife Priscilla Chan Zuckerberg, MD, has announced it will award 30 grants to patient-led organizations focused on advancing research in rare diseases.

The funding program, called Rare as One, continues the CZI’s original mission “to cure, prevent, or manage all diseases within our children’s lifetime.” CZI had originally planned to fund 10 patient groups, but when the call for applications received an overwhelming response, they decided to triple the number of grants.

In addition to receiving $450,000 over 2 years, CZI’s Rare as One program will provide each group with training and resources, pairing them  with mentors and science advisers and hosting monthly webinars to help with fundraising strategies.

The recipients include:

  • Cure HHT, which is focused on finding a cure for hemorrhagic telangiectasia, a disorder causing malformed blood vessels
  • The EHE Foundation, targeting epithelioid hemangioendothelioma, a rare vascular sarcoma
  • The Hermansky-Pudlak Syndrome Network, focused on a disorder involving bleeding diathesis, albinism, and blindness
  • LFS Association, providing information and support services for individuals with Li-Fraumeni Syndrome, an inherited predisposition to a wide range of cancers due to a TP53 mutation

All 30 organizations (full list) are tax-exempt nonprofit charities, many of them small and without paid staff.

Sources: STAT, February 3, 2020; CZI press release, February 3, 2020.