Recursos para familiares y cuidadores

Categoría

Understanding NARS1 Disorder

Destacado
Folleto para comprender el trastorno NARS1
Understanding NARS1 Disorder
Folleto para comprender el trastorno NARS1
Understanding NARS1 Disorder

Este útil folleto explica qué sucede cuando hay una mutación en el gen NARS1 y cómo eso causa el trastorno NARS1. Disponible en varios idiomas.

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Understanding NARS1 Disorder
Vídeo - Introducción al trastorno NARS1 y las enfermedades genéticas
Understanding NARS1 Disorder
Vídeo - Introducción al trastorno NARS1 y las enfermedades genéticas
Understanding NARS1 Disorder

Únase al estudiante de Consejería Genética, Sam, mientras habla sobre el trastorno NARS1: síntomas, genética y perspectivas familiares.

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Understanding NARS1 Disorder

Potential Therapies & Research Explained

Destacado
Drug Repurposing, Explained
Potential Therapies & Research Explained
Drug Repurposing, Explained
Potential Therapies & Research Explained

What if a medication that already exists could help with NARS1 Disorder? Watch Rachel explain drug repurposing and the research behind three promising candidates. For each one, take away a family guide and a clinical reference to share with your child's doctor.

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Potential Therapies & Research Explained
Asparagine and NARS1: A Guide for Families
Potential Therapies & Research Explained
Asparagine and NARS1: A Guide for Families
Potential Therapies & Research Explained

An overview of asparagine in NARS1, including what it is, why it’s being explored, and what the upcoming clinical trial in France aims to understand. Available in multiple languages

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Potential Therapies & Research Explained
Understanding the research toolkit
Potential Therapies & Research Explained
Understanding the research toolkit
Potential Therapies & Research Explained

We have a lot of tools in our research kit - learn about them here.

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Potential Therapies & Research Explained

Practical Care & Templates

Destacado
NARS1 Hospital Passport
Practical Care & Templates
NARS1 Hospital Passport
Practical Care & Templates

A simple, personalised document to help clinicians understand your child and provide safe, informed care, especially in hospital or emergency settings.

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Practical Care & Templates
Helping Us Connect with Your Clinician
Practical Care & Templates
Helping Us Connect with Your Clinician
Practical Care & Templates

Help us connect with clinicians who can support research and improve care for NARS1. Share these resources with your specialist to start the conversation. Available in multiple languages

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Practical Care & Templates

Family Meetings & Events

Destacado
Boston Family & Researcher Gathering - August 2026
Family Meetings & Events
Boston Family & Researcher Gathering - August 2026
Family Meetings & Events

Watch all of the presentations and discussions from our Family & Researcher conference in Boston.

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Family Meetings & Events
Encuentro Familiar Virtual – Febrero 2026
Family Meetings & Events
Encuentro Familiar Virtual – Febrero 2026
Family Meetings & Events

Un resumen de la Reunión Familiar Virtual de RBF, que cubre actualizaciones clave sobre la investigación de NARS1, el progreso clínico y lo que significa para las familias.

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Family Meetings & Events
Encuentro Familiar Virtual – Febrero 2025
Family Meetings & Events
Encuentro Familiar Virtual – Febrero 2025
Family Meetings & Events

Vea los aspectos más destacados de la reunión familiar NARS1, febrero de 2025, que reunió a familias, médicos e investigadores para compartir actualizaciones, conocimientos y experiencias de toda la comunidad.

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Family Meetings & Events