Home - News and Events - News - Chan Zuckerberg Initiative to fund 30 rare disease patient groups!
February 18 2020

Chan Zuckerberg Initiative to fund 30 rare disease patient groups!


Great news for the rare disease community: a funding program introduced by the Chan Zuckerberg Initiative (CZI) has selected 30 rare disease patient-led organizations to make up the new Rare As One Network. This network will aim to accelerate research and drive progress in the fight against rare diseases!

Each patient organisation will receive $450,000 that will help them in “developing and launching collaborative research networks in partnership with clinicians and scientists. The program provides funding, tools, and capacity-building support and training.” In addition to the funding, each organisation will also be paired with a patient group mentor and scientific adviser and will have the opportunity to attend monthly capacity-building webinars.

Some of the organisations that were chosen include several that focus on rare vascular diseases, including:

CLOVES Syndrome Community – Their aim is to support, educate, empower and improve the lives of those affected by CLOVES (Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi and Spinal/Skeletal Anomalies and/or Scoliosis) syndrome.

Cure HHT – An international foundation that advocates for patients and families with Hereditary Hemorrhagic Telangiectasia (HHT), while raising awareness, guiding and funding critical research, creating lasting collaborations and encouraging scientists to work on new treatments for this rare disease.

Lymphangiomatosis & Gorham’s Disease Alliance – Their mission is to bring hope to and improve the quality of life of patients with generalized lymphatic anomaly (GLA), also known as lymphangiomatosis, Kaposiform lymphangiomatosis (KLA), and Gorham-Stout disease (GSD) by providing support to members of the patient community and their families; education for the community, professionals, and the general public; and supporting research that will improve understanding of these diseases and establish best practices for their diagnosis and management.

We congratulate all recipients and can’t wait to see what research projects they initiate with this funding and what they accomplish!

Read the full news article here

To learn more about the Rare as One Network, take a look at their website here

Skip to content