Be ready for anything

Life transitions may present unique obstacles or occur at different times for people living with rare disease. It’s important to understand what types of changes you might encounter and how to navigate them to get ready for what comes next.

Whether it’s moving from pediatric to adult medical care, starting school, taking on a career, or making plans to ensure financial security later in life, #RAREis Transitions is here to help you prepare with guidance and connections to the right resources.

The content in this section may not be applicable in all countries.

What do you want to be ready for?

Education and Employment

Explore how to ensure your child receives the best education, learn about college and employment pathways, understand your rights in the workplace, and prepare for starting a new job by effectively navigating conversations with your employer.

Health Transitions and Empowerment:

Gain insights into the transition from pediatric to adult care and discover steps to help your child start learning to manage their own care more independently.

Financial and Future Planning

Learn more about securing appropriate care and resources for your child’s future, developing a comprehensive financial plan and ensuring their well-being and support, regardless of unforeseen circumstances.

Thank you to the following advocacy organizations that provided strategic guidance on our transitions topics: Arizona Network for PKU and Allied DisordersChild Neurology FoundationConnecting Families UCD FoundationCystinosis Research NetworkFriedreich’s Ataxia Research AllianceGlobal Genes, Immune Deficiency Education Association, Immune Deficiency FoundationNational Alliance for CaregivingOsteoPETrosis Society

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