Drafting a Dream Team: Celebrating Breakthroughs from the February 2024 Uplifting Athletes Young Investigator Draft
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Drafting a Dream Team: Celebrating Breakthroughs from the February 2024 Uplifting Athletes Young Investigator Draft

Having a rare disease can be challenging and isolating. It's often difficult to describe the experience to someone who hasn't gone through it. Mobilizing funds for support, resources, and research…

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Xenotransplant: Study of Genetically Engineered Pig Kidney in the Human Body Offers Hope for Future Organ Supply
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Xenotransplant: Study of Genetically Engineered Pig Kidney in the Human Body Offers Hope for Future Organ Supply

Out of 103,000 people in the United States waiting for a transplant, almost 88,000 individuals on the waiting list need a kidney transplant. These statistics were recently provided through Organ…

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Florida State University Harnesses Interdisciplinary Collaboration Through New Institute for Pediatric Rare Diseases
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Florida State University Harnesses Interdisciplinary Collaboration Through New Institute for Pediatric Rare Diseases

When it comes to rare disease, rare isn't actually that rare. More than 10,000 rare diseases have been identified. Rare diseases affect more than 350 million people across the globe…

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Rare Community Profiles: How Matrix Can Be Leveraged to Co-Create and Co-Deliver Care in the Rare Disease Space
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Rare Community Profiles: How Matrix Can Be Leveraged to Co-Create and Co-Deliver Care in the Rare Disease Space

  Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…

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This Brewer Raises Rare Disease Awareness and Funds Through Beer — And Now He Wants Others to Help
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This Brewer Raises Rare Disease Awareness and Funds Through Beer — And Now He Wants Others to Help

  Six years ago, Jonathan Kowalske's son Mac entered the world - and the family suddenly found themselves thrust into the rare disease community. Soon after birth, Kowalske and his…

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Adzynma Now FDA-Approved for Congenital Thrombotic Thrombyctopenic Purpura (TTP)
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Adzynma Now FDA-Approved for Congenital Thrombotic Thrombyctopenic Purpura (TTP)

As shared by MedScape, the U.S. FDA recently approved the first treatment for people living with congenital thrombotic thrombocytopenic purpura (TTP). Its name? Adzynma. In the past, people with TTP…

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