Category: Translational impact & engagement
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Read more: Our Rare Disease Network goes global
Our Rare Disease Network goes global
With the addition of international patient-led organizations, CZI’s Rare As One Network is exploring how to scale its model of supporting and elevating patient organizations to help address the global burden of rare diseases.
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Read more: How technology is democratizing genetic research for rare diseases
How technology is democratizing genetic research for rare diseases
Explore an interview with the Broad Institute’s Samantha Baxter about a new tool to estimate genetic prevalence.
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Read more: Finding rare disease treatments: 2 patient leaders share their stories
Finding rare disease treatments: 2 patient leaders share their stories
Listen to two of our Rare As One partners sharing their stories and experiences navigating diagnosis and organizing their communities to accelerate research.
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Read more: Lafora disease: A ‘particularly cruel’ form of epilepsy
Lafora disease: A ‘particularly cruel’ form of epilepsy
Learn how impacted families are partnering with biomedical researchers to find a cure for this rare disease.
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Read more: How patients with rare diseases are accelerating groundbreaking research for their communities
How patients with rare diseases are accelerating groundbreaking research for their communities
CZI’s Rare As One Network grant partners are driving scientific breakthroughs to fight for the lives of their loved ones.
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Read more: How a parent of a child with a rare disease built a team to find answers
How a parent of a child with a rare disease built a team to find answers
Collaboration between interdisciplinary researchers could serve as a model for the rare disease community.
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Read more: How an urgent call from a family in Italy changed this scientist’s career
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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Read more: When the work is personal: How a program associate builds resources for the rare disease community
When the work is personal: How a program associate builds resources for the rare disease community
Andra Stratton, a program associate for CZI’s Rare As One Project, is using her personal and professional experience to be a voice for people affected by rare disease.
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Read more: Uncovering sarcoidosis: The rare disease impacting black women in the U.S.
Uncovering sarcoidosis: The rare disease impacting black women in the U.S.
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Read more: Why these 2 scientists are teaming up to study, treat & prevent rare pediatric diseases
Why these 2 scientists are teaming up to study, treat & prevent rare pediatric diseases