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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.

Students living with rare disease have a unique set of considerations to consider when they are planning for college. This 4 part series provides insight into how to prepare for college beginning as early as middle school to arriving on campus to begin your collegiate journey.
View all resources in the Accessible College series.

Sibling Support is a 2-part series for siblings and their parents or caregivers who are navigating the balance of raising a child with a rare disease, in addition to other children. Parents and siblings learn common feelings, what signs to look out for, and how they can support themselves and their children.
View all resources in the Sibling Support series.

Reviews how drugs are developed from an idea at the bench through the processes it takes to make it to the bedside.

View all resources in the Drug Discovery and Development series.

Navigating Clinical Trials reviews how to find a clinical trial, questions to consider before joining a clinical trial; and participating in a clinical trial.

View all resources in the Navigating Clinical Trials series.

Discovering Wellness is a 3 part series hosted by a Board Certified Clinical Counselor covering the topics: Handling Emotions in the Clinical Trials Decision Process; Coping with the Rare Disease Diagnostic Journey; and Navigating Life with a Rare Disease.

View all resources in the Discovering Wellness series.

Advocacy Works! covers ways families can advocate for themselves from the diagnostic journey to high level government interactions.

View all resources in the Advocacy Works! series.

Holistic Inspirations provides a variety of ways for families to conquer stress through Personal Space, Personal Connections and Personal Preferences.

View all resources in the Holistic Inspirations series.

Navigating Insurance outlines private and public insurance programs and how families can enroll in qualifying programs.

View all resources in the Navigating Insurance series.

Medicaid and Government Programs entails a discussion about Medicaid coverage and the different government programs available to families with rare disease.

View all resources in the Medicaid and Government Programs series.

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, or selecting your Series in the above section.

We are here to help! Email us at InsightfulMoments@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 Paula, Enlace de Pacientes.

  1. Insightful Moments - Accessible College - Preparing a Middle Schooler for College
    Preparing a middle schooler for college
    Accessible College
  2. Insightful Moments - Video - Accessible College - Preparing a Middle Schooler for College
    Preparing a middle schooler for college (webinar recording)
    Accessible College
  3. Insightful Moments - Accessible College - Developing Independent Living and Executive Function Skills
    Developing independent living skills
    Accessible College
  4. Insightful Moments - Video - Accessible College - Developing Independent Living and Executive Function Skills
    Developing independent living skills (webinar recording)
    Accessible College
  5. New
    Insightful Moments - Accessible College - Transition to College with a Physical Disability or Chronic Health Condition
    Transition to College with a Physical Disability or Chronic Health Condition
    Accessible College
  6. New
    Insightful Moments Video
    Transition to College with a Physical Disability (webinar recording)
    Accessible College
  7. Insightful Moments - Sibling Support - Parent Roadmap
    Parent roadmap
    Sibling Support
  8. 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
  9. Insightful Moments - Sibling Support - Sibling Roadmap
    Siblings roadmap
    Sibling Support
  10. Insightful Moments - Sibling Support - Video - Supporting Rare Siblings
    Sibling support (webinar recording)
    Sibling Support
  11. Insightful Moments - Drug Discovery and Development - Understanding the FDA Approval Process for Gene Therapies
    Understanding the FDA approval process for gene therapies
    Drug Discovery and Development
  12. Insightful Moments - Drug Discovery and Development - Discovery Development and Regulatory
    Discovery, development & regulatory
    Drug Discovery and Development
  13. Insightful Moments Video
    Drug discovery (video)
    Drug Discovery and Development
  14. Insightful Moments - Drug Discovery and Development - Manufacturing and Commercialization
    Manufacturing & commercialization
    Drug Discovery and Development
  15. Insightful Moments Video
    Drug manufacturing (video)
    Drug Discovery and Development
  16. Insightful Moments Video
    Drug commercialization (video)
    Drug Discovery and Development
  17. Insightful Moments Video
    What are clinical trials (video)
    Navigating Clinical Trials
  18. Insightful Moments - Navigating Clinical Trials - Finding a Clinical Trial
    Finding a clinical trial
    Navigating Clinical Trials
  19. Insightful Moments Video
    Finding a clinical trial (video)
    Navigating Clinical Trials
  20. Insightful Moments - Navigating Clinical Trials - Participant Journey
    Participant journey
    Navigating Clinical Trials
  21. Insightful Moments - Navigating Clinical Trials - Questions to Consider
    Questions to consider
    Navigating Clinical Trials
  22. Insightful Moments Video
    Questions to consider (video)
    Navigating Clinical Trials
  23. Insightful Moments - Navigating Clinical Trials - Understanding the Informed Consent Form
    Understanding the informed consent form
    Navigating Clinical Trials
  24. Insightful Moments - Navigating Clinical Trials - Natural History Studies
    Natural history studies
    Navigating Clinical Trials
  25. Insightful Moments - Discovering Wellness - Handling Emotions in the Clinical Trial Decision Process
    Handling emotions in the clinical trial decision process
    Discovering Wellness
  26. Insightful Moments - Discovering Wellness - Coping and Accepting the Rare Disease Diagnostic Journey
    Coping and accepting the rare disease diagnostic journey
    Discovering Wellness
  27. Insightful Moments - Discovering Wellness - Navigating Life with a Rare Disease
    Navigating life with a rare disease
    Discovering Wellness
  28. Insightful Moments - Advocacy Works - Advocacy Works
    Advocacy works!
    Advocacy Works!
  29. Insightful Moments - Holistic Inspirations Webinar Recording
    Holistic inspirations (webinar recording)
    Holistic Inspirations
  30. Insightful Moments - Holistic Impressions - Personal Space
    Personal space
    Holistic Inspirations
  31. Insightful Moments Video
    Personal space (video)
    Holistic Inspirations
  32. Insightful Moments - Holistic Impressions - Personal Connection
    Personal connection
    Holistic Inspirations
  33. Insightful Moments Video
    Personal connection (video)
    Holistic Inspirations
  34. Insightful Moments - Holistic Impressions - Personal Preference
    Personal preference
    Holistic Inspirations
  35. Insightful Moments Video
    Personal preference (video)
    Holistic Inspirations
  36. Insightful Moments - Navigating Insurance - Insurance Terminology
    Insurance Terminology
    Navigating Insurance
  37. New
    Insightful Moments Video
    Insurance Terminology (video)
    Navigating Insurance
  38. Insightful Moments - Navigating Insurance - Different Coverages
    Different Coverages
    Navigating Insurance
  39. New
    Insightful Moments Video
    Different Coverages (video)
    Navigating Insurance
  40. Insightful Moments - Navigating Insurance - Denials and Approvals
    Denials and Appeals
    Navigating Insurance
  41. New
    Insightful Moments Video
    Denials and Appeals (video)
    Navigating Insurance
  42. Insightful Moments - Medicaid and Government Programs - Medicare and the Affordable Care Act
    Medicare and the Affordable Care Act
    Medicaid and Government Programs
  43. New
    Insightful Moments Video
    Medicare and the Affordable Care Act (video)
    Medicaid and Government Programs
  44. Insightful Moments - Medicaid and Government Programs - Medicaid and Waivers
    Medicaid and Waivers
    Medicaid and Government Programs
  45. New
    Insightful Moments Video
    Medicaid and Waivers (video)
    Medicaid and Government Programs
  46. Insightful Moments - Medicaid and Government Programs - SSI and SSDI
    SSI and SSDI
    Medicaid and Government Programs
  47. New
    Insightful Moments Video
    SSI and SSDI (video)
    Medicaid and Government Programs
We are here to help

Reach Out!

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