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. 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.
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: Accessible College | Sibling Support | Drug Discovery and Development | Navigating Clinical Trials | Discovering Wellness Series | Advocacy Works! | Holistic Inspirations | Medicaid and Government Programs | Navigating Insurance
Accessible College
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.
English
Español
Français Canadien
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.
English
Español
Français Canadien
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.
English
- Understanding the FDA Approval Process for Gene Therapies
- Discovery, Development & Regulatory
- Manufacturing & Commercialization
Español
- Comprender el proceso de aprobación de la Administración de Alimentos y Medicamentos para las genoterapias
- Descubrimiento, desarrollo y regulación
- Fabricación y comercialización
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
- Finding a Clinical Trial
- Participant Journey
- Questions to Consider
- Understanding the Informed Consent Form
Español
- Cómo encontrar un ensayo clínico
- Recorrido del participante
- Preguntas para considerar
- Formulario de consentimiento informado
Français Canadien
- Trouver un essai clinique
- Parcours du participant
- Questions à considérer
- Formulaire de consentement éclairé
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
- Handling Emotions in the Clinical Trial Decision Process
- Coping and Accepting the Rare Disease Diagnostic Journey
- Navigating Life with a Rare Disease
Español
- Cómo gestionar las emociones en el proceso de decisión del ensayo clínico
- Afrontar y aceptar el proceso diagnóstico de enfermedades poco frecuentes
- Navegar por la vida con una enfermedad poco frecuente
Français Canadien
- Gérer les émotions dans le processus de décision d’un essai clinique
- Faire face et accepter le parcours diagnostique d’une maladie rare
- Naviguer dans la vie avec une maladie rare
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.