Rare Community Profiles: Volv’s Innovative Approach Harnesses the Power of AI for Rare Disease Detection
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Rare Community Profiles: Volv’s Innovative Approach Harnesses the Power of AI for Rare Disease Detection

  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: Astellas Pharma’s Dr. Anthony Yanni Discusses the Success of the First-Ever Patient Advocacy Organization Action Week (PAOAW)
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Rare Community Profiles: Astellas Pharma’s Dr. Anthony Yanni Discusses the Success of the First-Ever Patient Advocacy Organization Action Week (PAOAW)

  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 Third Elephant on the Ramp to the Ark: How Carl’s Advocacy Affected His iMCD Journey
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Rare Community Profiles: The Third Elephant on the Ramp to the Ark: How Carl’s Advocacy Affected His iMCD Journey

  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: Superhero Liam Battles KAND with the Help of Shriners Children’s
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Rare Community Profiles: Superhero Liam Battles KAND with the Help of Shriners Children’s

  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 Monster Inside: How a Boundary-Breaking Treatment Helped Sean in His Battle with von Hippel-Lindau Syndrome
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Rare Community Profiles: The Monster Inside: How a Boundary-Breaking Treatment Helped Sean in His Battle with von Hippel-Lindau Syndrome

  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: Stigma Stops Anal Cancer Screenings, But Dr. Gary Bucher is Ready to Start Conversations on the Importance of Anal Health
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Rare Community Profiles: Stigma Stops Anal Cancer Screenings, But Dr. Gary Bucher is Ready to Start Conversations on the Importance of Anal Health

  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 Only One Diagnosed in the US: Why Gabby is Starting Conversations on NLSD-M
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Rare Community Profiles: The Only One Diagnosed in the US: Why Gabby is Starting Conversations on NLSD-M

  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: Stiff Person Syndrome (SPS) Advocates Respond to Celine Dion’s Claims in “I Am: Celine Dion”
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Rare Community Profiles: Stiff Person Syndrome (SPS) Advocates Respond to Celine Dion’s Claims in “I Am: Celine Dion”

  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 New Treatment Option on the Horizon: Zevra Therapeutics’ Dan Gallo Discusses Arimoclomol, the NDA PDUFA Date, and the Needs of the NPC Community
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Rare Community Profiles: A New Treatment Option on the Horizon: Zevra Therapeutics’ Dan Gallo Discusses Arimoclomol, the NDA PDUFA Date, and the Needs of the NPC Community

  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: White Paper Discusses Access Barriers in IgG4-Related Disease (IgG4-RD)
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Rare Community Profiles: White Paper Discusses Access Barriers in IgG4-Related Disease (IgG4-RD)

  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: #RAREis: Increasing Medical Access and Equity for the Hispanic Community through The Akari Foundation’s Initiatives
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Rare Community Profiles: #RAREis: Increasing Medical Access and Equity for the Hispanic Community through The Akari Foundation’s Initiatives

  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 Her Daughter’s MCTD Led Ronda to Help Families Navigate Rare Disease Diagnoses
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Rare Community Profiles: How Her Daughter’s MCTD Led Ronda to Help Families Navigate Rare Disease Diagnoses

  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: From Survivor to Advocate: Ethan Zohn on Cannabis Rescheduling and Cancer Care
Photo courtesy of Ethan Zohn

Rare Community Profiles: From Survivor to Advocate: Ethan Zohn on Cannabis Rescheduling and Cancer Care

  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 Two Parents Are Working to Change the Narrative Around CASK Gene Disorder
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Rare Community Profiles: How Two Parents Are Working to Change the Narrative Around CASK Gene Disorder

  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: When Sierra’s Son Was Diagnosed with Warsaw-Breakage Syndrome (WABS), She Knew She Needed to Make a Difference
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Rare Community Profiles: When Sierra’s Son Was Diagnosed with Warsaw-Breakage Syndrome (WABS), She Knew She Needed to Make a Difference

  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 a Clinical Study Changed Dana’s Trajectory After Desmoid Tumor Recurrence
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Rare Community Profiles: How a Clinical Study Changed Dana’s Trajectory After Desmoid Tumor Recurrence

  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 Kenzi is Navigating the Challenges of MCTD, FCAS, and Medical PTSD
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Rare Community Profiles: How Kenzi is Navigating the Challenges of MCTD, FCAS, and Medical PTSD

  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: 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.…

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

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