Participating In A Clinical Trial: A Step-by-Step Guide for Rare Disease Patients and Families

July 14, 2021

This guide aims to provide general information and guidance for anyone affected by a rare disease who is considering participating in a clinical.

The journey of participating in a trial can be a long journey towards hope for many people. The process can be complex and people, even people with a scientific and medical background, commonly have many questions about the process. We, in the rare community, all want to make sure we are doing our best for ourselves and our loved ones. It can feel overwhelming to embark on a clinical trial journey, and we hope the information provided here can help you to navigate it with confidence.

This step-by-step guide walks aims to walk you through the process of joining and participating in a clinical trial from start to finish. Every clinical trial is different, and some parts of this guide may not be relevant to you or to some of the clinical trials you are presented.

One of the key aims of this guide is to help you to advocate for yourself or your loved one throughout the process.

Always know that you are not alone. You are part of an incredible community of individuals affected by rare diseases and allies who have dedicated their lives to creating progress in rare conditions.

We encourage you to reach out and connect to patient advocacy groups and others within the RARE community as you learn more about participating in clinical trials and decide whether it’s right for you.

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