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Rare Diseases
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Unlocking Answers: Transforming Rare Disease Diagnosis

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Rare Diseases

Three Actions That Lift the Voices of Those With Rare Diseases

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  • Rare Diseases

    Don’t Ignore the Signs: Rare Diseases Are More Common Than You Think

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    So, You’ve Received a Rare Disease Diagnosis: Now What?

    Rare Diseases

    From Diagnosis to Breakthroughs: A Mission to Cure Duchenne

    Rare Diseases

    Sonia’s Journey: How Clinical Trials Give Hope for Rare Childhood Cancers

    Over 50% of children with childhood cancer receive treatments in clinical trials, making them critical for treatment outcomes. The cough was relentless. Sonia Benjamin sat in her doctor’s office with her mom, hoping for some magic medicine to make the painful hacking stop. She didn’t even think to mention the other ailment that was bothering … Continued
    Rare Diseases

    Childhood Cancer Is Rare, but for Some Families It’s Not

    Rare Diseases

    Paving the Way to Better Health: A Guide to Clinical Trials for Rare Diseases

    Rare Diseases

    Rooted in Love: A Caregiver’s Journey

    Rare Diseases

    New Therapies Offer Hope for People with Rare Diseases

    Rare Diseases

    Oxygen Reform Remains a Critical Issue

    Rare Diseases

    Why We Advocate: The Importance of Access to Efficient, High-Quality Healthcare

    Anyone living with a rare disease wants access to care — not just substandard healthcare, but healthcare that will keep them alive and healthy. Sadly, this is often not the case for so many patients.  I am Laura Bonnell, the mother of two daughters with cystic fibrosis. For 30 years, I have advocated for my … Continued
    Rare Diseases

    Shortening the Diagnostic Odyssey Through Newborn Screening 

    Rare Diseases

    It’s Time to End the Financial Burden of Rare Diseases

    Rare Diseases

    Ending Stigma for Persons Living With a Rare Disease

    Rare Diseases

    Shifting the Paradigm on Rare Diseases Through Global Action

    Rare Diseases

    Bridging The Gaps in Rare Disease Advocacy and Support

    Rare Diseases

    Leveraging the Power of Model Organisms to Diagnose and Develop New Therapies for Rare Diseases

    Studies of human disease-causing genes can often be performed in model organisms like yeast, fruit flies, and mice, leading to breakthroughs in diagnoses and treatment. It is estimated that there are more than 10,000 to 12,000 rare diseases affecting more than 20 million people in the United States and 400 million worldwide. An estimated 80% … Continued
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    “Untold Stories” Podcast Shares Powerful Tales of Strength and Perseverance Amid Severe Autoimmune Conditions

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    Rare Diseases

    The Power of Miracle Mornings

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    Pursuing Scientific Curiosity to Strengthen the Rare Blood Disorder Community

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    Rare Diseases

    Investing in Partnerships to Overcome Challenges in Rare Disease

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    Rare Diseases

    Global Genes CEO Talks Next Generation Advocacy