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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 - Medicaid and Government Programs - Medicare and the Affordable Care Act
    Medicare and the Affordable Care Act
    Medicaid and Government Programs
  2. New
    Insightful Moments Video
    Medicare and the Affordable Care Act (video)
    Medicaid and Government Programs
  3. Insightful Moments - Medicaid and Government Programs - Medicaid and Waivers
    Medicaid and Waivers
    Medicaid and Government Programs
  4. New
    Insightful Moments Video
    Medicaid and Waivers (video)
    Medicaid and Government Programs
  5. Insightful Moments - Medicaid and Government Programs - SSI and SSDI
    SSI and SSDI
    Medicaid and Government Programs
  6. 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).