Understanding Pathways to Adulthood: Family Stories That Guide the Future

Understanding Pathways to Adulthood: Family Stories That Guide the Future

As young people with rare genetic disorders reach adulthood or the age of majority (the legal age of adulthood as declared by law in your country), families around the world face important discussions and decisions about what adulthood means for them.

As a family, you have to decide if your young adult can make legal, medical, or financial decisions, and if those decisions result in the correct level of independence or dependence for your young adult and your family.

At Simons Searchlight, we recognize the strength it takes to navigate this stage. Your experiences can help guide others.

Why We’re Asking for Your Story

We are inviting caregivers and families who have supported a dependent into adulthood to share their experiences through our Understanding Pathways to Adulthood survey.

By sharing your story, you can:

• Support other families preparing for this stage
• Guide the development of new Simons Searchlight resources
• Strengthen how we support long-term participation in research across the lifespan

Thank you for completing this survey and sharing your story.