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- EIN 45-3056921
- info@clovessyndrome.org
- Po Box 406 W Kennebunk ME 04094 USA
- https://clovessyndrome.org/
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- CLOVESSyndrome
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Nonprofit Overview
Mission: CLOVES Syndrome Community supports, educates, empowers and improves the lives of those affected by CLOVES Syndrome.
Target demographics: People and families affected by a CLOVES or PROS diagnosis
Programs: 1. Provide information and resources to educate others about CLOVES Syndrome including our robust website 2. Build and sustain a broad base of funding sources to support our mission and goals 3. Family Assistance Program - Utilize incoming funds to provide financial assistance to those impacted by CLOVES Syndrome 4. Participate in and promote CLOVES Syndrome research to assist in a complete understanding of the disease 5. Biennial CLOVES Family Conference 6. Betsy's Camp - Annual CLOVES Family camp 7. International Scientific Meeting for PIK3CA Related Conditions 8. Award grants for continued research for CLOVES and PROS 9. Natural History Database through AllStripes that will enable new PIK3CA-related overgrowth spectrum (PROS) research projects 10. We are part of the CZI Rare As One Network, working to create a patient-led collaborative research network 11. Back to School Bucks provides financial assistance related to apparel and shoe modifications, adaptive clothing and shoes in multiple sizes 12. Research RFP Program 13. Contact Registry 14. Advocacy, ongoing outreach to schools, organizations, hospitals and media outlets to raise awareness