Organization Spotlight: Danon Foundation
About Danon Foundation
The Danon Foundation is a trusted resource for people affected by Danon disease to find and share knowledge and to build community.
Our Mission
The Danon Foundation boldly empowers people living with Danon disease, providing trusted information, resources, and support to help navigate life, from diagnosis to treatment.
We enable the best care possible by supporting education, increasing awareness, and building a community of patients, family members, caregivers, physicians, scientists, friends and partners.
Our Origin Story
Jenny and Amy are the co-founders of the Danon Disease Foundation. Jenny has been personally impacted by Danon disease and Amy’s daughter was diagnosed with Danon in 2012. Both founders felt that there was little to no information on this rare disease and are committed to ensuring that every person living with Danon disease has a support system in place. The foundation was created to provide support and trusted information for people living with Danon disease.
Who We Support/What We Do
The foundation is building a platform that increases awareness and provides education, supporting research and development in collaboration with industry partners, and partnering with organizations to bring better, faster diagnosis.
We provide support through resources and information, community support through our online support groups, and partnerships with other industry and advocacy stakeholders. We are also working to bring better access to faster diagnosis for our community through free genetic testing services.
Resources
Our website: https://www.danonfoundation.org/resources/
Our online support groups:
https://www.facebook.com/groups/92786839826/
https://www.facebook.com/groups/312612219400801/
Contact
contact@danonfoundation.org
