2019 RARE Patient Impact Grant

The Koolen-de Vries Syndrome Foundation is proud to have been selected from among some 200 other applicants to receive the 2019 RARE Patient Impact Grant from Global Genes. Launched in 2015, this grant program directs financial support to RARE Foundation Alliance partner organizations and patient advocacy groups to provide education, resources and support to rare disease patients and caregivers.

The KdVS Foundations has plans to use this grant money to create two videos – one focused on education and an introduction to Koolen-de Vries Syndrome and one being an awareness video that will include parent interviews. These videos will be used to educate doctors and newly diagnosed individuals, as well as to spread awareness to the public on all of our social media platforms. Video production will take place at the 2019 Patient Advocacy Summit.

We are thrilled and honored to receive this award!

Read more on Global Genes website.

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