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Resources

We’re Here For You

Tough Genes recognizes the many struggles that come with having a child with a rare or complex disorder. Check out the information below for a variety of resources that can help families navigate through their IRF2BPL-Related Disorder journey. Rare, but not alone.

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RARE Concierge

We have proudly partnered with Global Genes and would like to introduce you to their RARE Concierge. The RARE Concierge patient service guides are here to help you navigate the world of rare caregiving. What can the Global Genes RARE Concierge do for you? Their free service offers support and understanding, Identifying financial resources to help with treatment, travel, or care, finding a specialist or care resources, and so much more.
 

Simons Searchlight: A Family Guide

This guide covers the steps from genetic diagnosis to finding resources and potential treatments for rare genetic neurodevelopmental disorders. It is designed to help caregivers and families navigate the complicated world of rare diseases.

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Knowing the cause of your child’s neurodevelopmental diagnosis can be a relief. But, a new genetic diagnosis can also be stressful, scary, and overwhelming. It is normal to have a wide range of emotions – sometimes conflicting – about a new diagnosis. It is important to remember that there is no right or wrong way to respond, and we all adjust to information differently.

RARE Bears

Rare Science has partnered with Tough Genes to bring their RARE Bear program to families of children in our rare community. The RARE Bears are one of a kind handmade bears matched to a child's favorite colors and things, made by sewists around the world for children globally. RARE Science is a volunteer run non-profit with the aim to improve diagnosis and medicines for kids with rare diseases around the world.  The RARE Science RARE Bear Program brings joy to kiddos, supports families and provides resources and camaraderie.

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