The Cystinosis Research Foundation’s mission is two-fold: to find better treatments and a cure for cystinosis. Cystinosis is a rare, metabolic and genetic disease that afflicts approximately 2000 children worldwide. The CRF focus is increasingly on the clinical and translational research crucial to making strides towards a cure for cystinosis. CRF is committed to prioritizing and aggressively supporting research with potential to significantly improve the quality of life for patients with cystinosis. Funding quality research studies is an ongoing process. The CRF announces two global calls for research proposals every year. After evaluation by our Scientific Review Board, research grants are issued. In 2006, the CRF established the first Cystinosis Research Fellowship Program designed to support scientists and new researchers who have an interest in cystinosis research.

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Natalie’s wish, ‘To have my disease go away forever’ was the catalyst in our quest to find a cure. Those seven words provided the motivation for us to establish the Cystinosis Research Foundation in 2003. We knew at that moment that we needed to make every effort to make Natalie’s wish – and the wish of others with cystinosis – a reality.

We established the Cystinosis Research Foundation with the express mission to find better treatments and a cure for cystinosis. Since that time, our community of extraordinary friends and family has helped make Natalie’s wish move closer to reality by donating more than $11.6 million for cystinosis research. We are moving closer to the cure every day.

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The CRF has witnessed tremendous growth as other cystinosis families joined our efforts. Their friends and families have embraced the cystinosis cause and are enthusiastically raising funds to support cystinosis research through CRF. We have found strength in numbers and our joint effort gives us a renewed sense of community and purpose.

The CRF family is working in a variety of amazing ways to support cystinosis research. As we move closer to the reality of a slow-release medicine for our children, we are united in our commitment to fund researchers and scientists in our quest to find a cure. The variety of fundraising ideas and events are amazing and an inspiration to us all as we join together on our journey towards the cure.

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