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Patient Resources

Welcome to Insightful Moments™

Insightful Moments is a community education series of programs and materials created to support patients with rare disease and their families.

Insightful Moments My VIBE™

Listen to patients and their families as they share their unique experiences living with a rare disease – from diagnosis to overcoming challenges and building a supportive community.

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Insightful Moments Educational Series Materials

Choose your educational series and view PDFs, videos, and webinar recordings to help you along your journey.

Below, you will find pdf roadmaps to help you along your journey. Click the tile to open a single pdf, or check the box to download multiple pdfs at one time. Videos will open in a video player, so you can view them directly in your browser. You can navigate between the Education Series’ by clicking the category button.

We are here to help! Email us at patientengagement@ptcbio.com, or call 1-833-PTC-HOPE, 1-833-PTC-VIDA (Spanish)

Para obtener más información sobre Momentos de Claridad, por favor visite https://ptcmomentosdeclaridad.com o comuníquese con Enlace de Pacientes.

  • Insightful Moments - Video - Accessible College - Preparing a Middle Schooler for College
    Preparing a middle schooler for college (webinar recording)
    Accessible College
  • Insightful Moments - Video - Accessible College - Developing Independent Living and Executive Function Skills
    Developing independent living skills (webinar recording)
    Accessible College
  • New
    Insightful Moments Video
    Transition to college with a physical disability (webinar recording)
    Accessible College
  • New
    Insightful Moments - Accessible College - Going to college with a Personal Care Attendant
    Going to college with a personal care attendant (webinar recording)
    Accessible College
  • Insightful Moments - Sibling Support - Video - The Impact of Rare Disease on Siblings
    The impact of rare disease on siblings: A parent perspective (webinar recording)
    Sibling Support
  • Insightful Moments - Sibling Support - Video - Supporting Rare Siblings
    Sibling support (webinar recording)
    Sibling Support
  • Insightful Moments - Drug Discovery and Development - Understanding the FDA Approval Process for Gene Therapies
    (PDF) (opens in new tab)
    Understanding the FDA approval process for gene therapies
    Drug Discovery and Development
  • Insightful Moments Video
    Drug discovery (video)
    Drug Discovery and Development
  • Insightful Moments Video
    Drug manufacturing (video)
    Drug Discovery and Development
  • Insightful Moments Video
    Drug commercialization (video)
    Drug Discovery and Development
  • Insightful Moments Video
    What are clinical trials (video)
    Navigating Clinical Trials
  • Insightful Moments Video
    Finding a clinical trial (video)
    Navigating Clinical Trials
  • Insightful Moments Video
    Questions to consider (video)
    Navigating Clinical Trials
  • Insightful Moments Video
    Handling emotions in the clinical trial decision process
    Discovering Wellness
  • Insightful Moments Video
    Coping and accepting the rare disease diagnostic journey
    Discovering Wellness
  • Insightful Moments Video
    Navigating life with a rare disease
    Discovering Wellness
  • Insightful Moments Video
    Life on a waterbed: Trauma in the family system (webinar recording)
    Discovering Wellness
  • Insightful Moments Video
    Advocacy Works! (webinar recording)
    Advocacy Works!
  • Insightful Moments - Holistic Inspirations Webinar Recording
    Holistic inspirations (webinar recording)
    Holistic Inspirations
  • Insightful Moments Video
    Personal space (video)
    Holistic Inspirations
  • Insightful Moments Video
    Personal connection (video)
    Holistic Inspirations
  • Insightful Moments Video
    Personal preference (video)
    Holistic Inspirations
  • New
    Insightful Moments Video
    Insurance Terminology (video)
    Navigating Insurance
  • New
    Insightful Moments Video
    Different Coverages (video)
    Navigating Insurance
  • New
    Insightful Moments Video
    Denials and Appeals (video)
    Navigating Insurance
  • New
    Insightful Moments Video
    Medicare and the Affordable Care Act (video)
    Medicaid and Government Programs
  • Insightful Moments Video
    Medicaid and Waivers (video)
    Medicaid and Government Programs
  • New
    Insightful Moments Video
    SSI and SSDI (video)
    Medicaid and Government Programs
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We are here to help

Reach Out!

To learn more about Insightful Moments please contact us at patientengagement@ptcbio.com
or call 1-833-PTC-HOPE, 1-833-PTC-VIDA (Spanish).