Science Simplified: Differences Between a Gene Therapy Clinical Trial and a Cure
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Science Simplified: Differences Between a Gene Therapy Clinical Trial and a Cure

Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…

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Rare Community Profiles: Revving for Hope: Raising HoFH Awareness in One Ride
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Rare Community Profiles: Revving for Hope: Raising HoFH Awareness in One Ride

  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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Rare Community Profiles: How Beth and Madison Advocated for Public Funding for the First Cystic Fibrosis (CF) Modulator in Canada
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Rare Community Profiles: How Beth and Madison Advocated for Public Funding for the First Cystic Fibrosis (CF) Modulator in Canada

  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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Rare Community Profiles: The Urgent Need for a Cure for Niemann-Pick Type C: Two Parents Share Their Perspectives
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Rare Community Profiles: The Urgent Need for a Cure for Niemann-Pick Type C: Two Parents Share Their Perspectives

  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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Rare Community Profiles: Kristi’s Fight to Combat Misconceptions about Prader-Willi Syndrome (PWS): “Our Children Have PWS; They Are Not PWS”
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Rare Community Profiles: Kristi’s Fight to Combat Misconceptions about Prader-Willi Syndrome (PWS): “Our Children Have PWS; They Are Not PWS”

  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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Rare Community Profiles: A Mother-Son Pair Discuss the Importance of Wellbeing in Managing NF2-Related Schwannomatosis (NF2)
Jo and Oscar. Photo courtesy of Jo Ward

Rare Community Profiles: A Mother-Son Pair Discuss the Importance of Wellbeing in Managing NF2-Related Schwannomatosis (NF2)

  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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Rare Community Profiles: Yellow for Yiannis: Angela’s Mission to Advance Research into IRF2BPL
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Rare Community Profiles: Yellow for Yiannis: Angela’s Mission to Advance Research into IRF2BPL

  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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Rare Community Profiles: A Mother’s Journey to Raise 4H Leukodystrophy POLR3B Awareness and Change Her Son’s Life
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Rare Community Profiles: A Mother’s Journey to Raise 4H Leukodystrophy POLR3B Awareness and Change Her Son’s Life

  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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Rare Community Profiles: Could It Be HCM? A Mother-Daughter Duo Raise Hypertrophic Cardiomyopathy Awareness
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Rare Community Profiles: Could It Be HCM? A Mother-Daughter Duo Raise Hypertrophic Cardiomyopathy Awareness

  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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Rare Community Profiles: A Potential Treatment Turning Point for ALK-Positive NSCLC: Dr. Ken Culver Shares Insights from the Phase 3 ALINA Study on Alecensa
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Rare Community Profiles: A Potential Treatment Turning Point for ALK-Positive NSCLC: Dr. Ken Culver Shares Insights from the Phase 3 ALINA Study on Alecensa

  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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Rare Community Profiles: For Rare Disease Week, Barth Syndrome Advocates Took to Capitol Hill to Urge the FDA to Review NDA for Elamipretide

  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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Rare Classroom: Narcolepsy
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Rare Classroom: Narcolepsy

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

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Rare Community Profiles: How Patient Advocate Kecia J. Survived and Thrived Through Her Rare Colorectal Cancer Battle
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Rare Community Profiles: How Patient Advocate Kecia J. Survived and Thrived Through Her Rare Colorectal Cancer Battle

  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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Rare Community Profiles: In Pursuit of Progress: From HSP Diagnosis to Rare Disease Research 
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Rare Community Profiles: In Pursuit of Progress: From HSP Diagnosis to Rare Disease Research 

  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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Rare Community Profiles: A Hidden Agony: Why James is Shedding Light on Geniculate Neuralgia and its Impact on Daily Life
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Rare Community Profiles: A Hidden Agony: Why James is Shedding Light on Geniculate Neuralgia and its Impact on Daily Life

  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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Rare Community Profiles: Breaking Barriers: How Nicole and Emma Offer Hope Amidst a Dravet Syndrome Diagnosis
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Rare Community Profiles: Breaking Barriers: How Nicole and Emma Offer Hope Amidst a Dravet Syndrome Diagnosis

  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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