Increasing Awareness Brings More Support for Rare Disease Patients

The National Center for Advancing Translational Sciences (NCATS) supports rare disease patients and their communities. They provide translational research funding, tools and other resources that are helping to address unique challenges.

Children born with rare genetic diseases such as Epidermolysis Bullosa (EB) face daily challenges. Rafi and Ella are two girls who live with the challenges of this disease. Both of them and their respective parents have been at the forefront in helping to bring awareness of this disease. These two families in particular, credit the positive effects the NCATS and the National Institutes of Health (NIH) Clinical Center have brought by co-sponsoring Rare Disease Day at NIH.

As more patient advocacy groups work together with researchers, it can accelerate progress towards help for those who suffer from these devastating disorders.

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