RareKC.org
The RareKC Project was founded in 2015 to activate a change in the lives of those challenged by rare genetic conditions and diseases.
While individual rare conditions have small patient populations, collectively the rare disease community is larger than the AIDs and Cancer communities combined. Despite its size, the community lacks a unified voice, as only 15% of rare diseases have organizations or foundations providing support or driving research.
The RareKC Project is bringing together families impacted by rare conditions in the Kansas City area. As individuals, our numbers are often too small to affect the significant changes needed to impact the future of rare. Our combined voices will create the advocacy network needed to achieve RareKC’s ultimate goal – to build a center of excellence for rare disease in Kansas City – the first of it’s kind in the country.
Visit their website at: www.RareKC.org
Fisher House Foundation
Fisher House Foundation builds comfort homes where military and veterans families can stay free of charge, while a loved one is in the hospital. These homes are located at military and VA medical centers around the world.Fisher Houses have up to 21 suites, with private bedrooms and baths. Families share a common kitchen, laundry facilities, a warm dining room and an inviting living room.
Since inception, the program has saved military and veterans’ families an estimated $451 million in out of pocket costs for lodging and transportation. Fisher House Foundation also operates the Hero Miles program using donated frequent flyer miles to bring family members to the bedside of injured service members as well as the Hotels for Heroes program using donated hotel points to allow family members to stay at hotels near medical centers without charge. The Foundation also manages a grant program that supports other military charities and scholarship funds for military children, spouses and children of fallen and disabled veterans.
Visit their website at: www.fisherhouse.org