News
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How an urgent call from a family in Italy changed this scientist’s career
How virologist Ivan Marazzi was inspired to change the course of his career after a pivotal conversation with a concerned father seeking answers.
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When the work is personal: how a program associate builds resources for the rare disease community
Discover how Andra Stratton uses her personal and professional experiences to support the patient-led organizations improving the lives of people affected by rare disease.
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Uncovering sarcoidosis: The rare disease impacting black women in the U.S.
Sarcoidosis is an inflammatory disease disproportionately impacting Black women in the U.S. But the patient advocacy community is coming together to improve diagnosis and treatment.
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CZI Awards $13 Million to Patient-Led Organizations Advancing Rare Disease Research
CZI announced $13 million in funding for 40 patient-led, rare disease advocacy organizations working alongside researchers and clinicians.
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Why these 2 scientists are teaming up to study, treat & prevent rare pediatric diseases
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Fighting to cure ALS and find #curesforall with Brian Wallach
The Chan Zuckerberg Initiative interviews Brian Wallach of I AM ALS, who is leading the fight to cure the rare neurodegenerative disease ALS.
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Chan Zuckerberg Initiative Awards $1.3 Million to Support the Global Rare Disease Community
Grants to NORD and EURORDIS Support Organizational Capacity Building and Rare Disease Day Campaigns
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Fast Company: Why Patients Have Begun to Lead the Way in the Fight Against Rare Diseases
How CZI is Supporting Patient Groups to Drive Research Forward
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Chan Zuckerberg Initiative Awards $13.5 Million to Drive Progress Against Rare Diseases
New Grants Support 30 Patient-Led Organizations with Funding and Capacity-Building Services
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Supporting a Patient-Led Movement to Cure ALS — and Other Rare Diseases
New $453,000 Grant Supports I AM ALS to Develop Technology and Build a Scalable Movement to Fight Amyotrophic Lateral Sclerosis
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Chan Zuckerberg Initiative Launches New Program to Support Patients to Accelerate Progress Against Rare Diseases
Rare As One Project Provides Funding, Technology, Mentorship, and Capacity-Building Services for Patient-Led Organizations
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#RareAsOne: 7,000 rare diseases, 1 fight
Rare disease patients and their families share their experiences living with a rare disease. Learn about their efforts to drive forward research and find cures.