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Funding Update
THE IPPF RECEIVES A RARE DISEASE WEEK SCAVENGER HUNT GRANT
Throughout Rare Disease Week 2021, the EveryLife Foundation for Rare Diseases challenged advocates to engage and participate by earning points in a scavenger hunt. Throughout the week, advocates were awarded points for attending events, meeting with their legislators, and other actions.
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EveryLife recently announced that the top 50-point earners were each awarded a grant ranging from $1,000 to $5,000 for the rare disease non-profit organization of their choice! EveryLife awarded a total of $100,000 to 36 rare disease non-profit organizations in the name of these amazing advocates.
Rare Disease Legislative Advocates appreciates the participation of all rare disease advocates at Rare Disease Week! Not only did the participation of these advocates help to expand the voice and reach of our collective rare community—as well as to raise awareness for their respective disease communities—but their active engagement throughout the week also RAISED FUNDS for their organizations.
Together, IPPF rare patient advocates secured a $5,000 grant from the EveryLife Foundation for their efforts during Rare Disease Week 2021.
IPPF AWARDED $50,000 OPERATIONAL GRANT FROM THE CHAN ZUCKERBERG INITIATIVE
The IPPF is grateful to share that we have received a one-time, $50,000 grant from the Chan Zuckerberg Initiative in support of accelerating research and finding treatments and cures for pemphigus and pemphigoid.
Recently, the Chan Zuckerberg Initiative (CZI) announced $13 million in funding for 40 patient-led, rare disease advocacy organizations that are working alongside researchers and clinicians to accelerate research in their disease areas. These grants are part of CZI’s Rare As One (RAO) Project, aimed at supporting and lifting up the work that patient communities are doing to drive progress in the fight against rare diseases.
Rare disease is not rare. As many as 7,000 rare diseases affect 400 million people globally. The Rare As One Project is committed to uniting rare disease patient advocates in their quest for cures.
To read more about the funding and CZI’s Rare As One Project, visit https://chanzuckerberg.com/
