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Patient Resources

Welcome to Insightful Moments™

Insightful Moments is an archive of valuable information for people and their families living with rare diseases. View helpful resources to help you along your journey. Watch informative videos. Listen to the My Vibe™ podcast.
Insightful Moments is a community education series of programs and materials created to support patients with rare disease and their families. The programs empower patients and families through different learning styles and communication methods. To learn more about Insightful Moments please contact Paula Orandash, patient engagement liaison, at InsightfulMoments@ptcbio.com, or by calling 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 Orandash, Enlace de Pacientes.
Insightful Moments

My Vibe™Click here to listen as we speak to patients and their families about their unique experiences in the rare disease community – from diagnosis to overcoming challenges and building a supportive community. Click the links below for helpful, printable PDFs that may help you visualize your journey.

Jump to: Sibling Support | Drug Discovery and Development | Navigating Clinical Trials | Discovering Wellness Series | Advocacy Works! | Holistic Inspirations | Medicaid and Government Programs | Navigating Insurance

Sibling Support

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.

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Español

Drug Discovery and Development

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

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Navigating Clinical Trials

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

English
Español
français canadien

Discovering Wellness 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.

English
Español
français canadien

Advocacy Works!

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

English
Español

Holistic Inspirations

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

English
Español
français canadien

Medicaid and Government Programs

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

English
Español

Navigating Insurance

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

English
Español