Funding adoption assistance grants for children with medical needs has always been a priority for Gift of Adoption, amounting to 35 percent of our grant making. When further analysis revealed that 40 percent of these children have rare diseases, from congenital heart disease to Stromme Syndrome, we saw the opportunity to do something different – this was the inspiration for the RAREis Adoption Fund created through a partnership with Horizon.
A disease or disorder is categorized as rare in the US when it affects fewer than 200,000 individuals. Diagnosis is often difficult because common symptoms can mask rare disease and a lack of scientific knowledge about the condition can cause a delay of diagnosis or even misdiagnosis. When an accurate diagnosis can be made, there may be no curative treatment available, the limited treatment available may be difficult to access, and any treatment that is possible will likely be ongoing and life-long.
Children waiting for adoption and living with a rare disease are at very high risk and need both immediate and ongoing care. And although there is no guarantee of their future health, there are generous families willing to love them and to care for them regardless of the work, expense and heartache that loving them might entail.
Horizon is highly invested in the rare disease community. In February of 2017, the company launched RAREis™, an initiative that aims to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources for the rare disease community.
This year Horizon and Gift of Adoption joined forces to form an exciting partnership designed to help orphaned children suffering from rare diseases to find a home. The RAREis Adoption Fund at Gift of Adoption is dedicated to funding adoption assistance grants for more than 30 children with rare diseases through Gift of Adoption’s application process. In a permanent home, treatment can be sought and implemented, symptoms can be controlled, and life expectancy can be maximized. In addition to medical care, these children will have a family to provide the love, security, advocacy and nurturing that will make that extended life as happy and fulfilled as possible.
For questions about the #RareIs Adoption Fund or to make a donation to support adoption assistance grants for children with rare diseases, please contact Sharon Komlofske (firstname.lastname@example.org).