RARE Capacity Building
Champ1 Research Foundation
The Champ1 Research Foundation supports families affected by the Champ1 gene mutation through clinical research, effective treatment, public awareness, early detection and family support. The RARE Patient Impact Grant will allow the organization to bring information and resources to families who cannot travel or have financial limitations.
Cold Agglutinin Disease Foundation
The Cold Agglutinin Disease Foundation (CADF) strives to foster and increase public awareness and develop education surrounding the diagnosis, management, and treatment of cold agglutinin disease (CAD). With the help of the RARE Patient Impact Grant, CADF will improve organizational development through advancements in technology, strategic planning and ensure the fulfillment of long-term objectives quicker and with greater impact.
Mast Cell Hope, Inc.
Mast Cell Hope was built out of a desire to improve the suffering of mast cell patients and exists to advance research to find new treatments and ultimately cures for mast cell diseases. With the funds from the RARE Patient Impact Grant, Mast Hope Cell, Inc. will use digital media to expand their reach and exposure in the mast cell community.
As a coalition of doctors, researchers, patients and entrepreneurs, Mission: Cure is pioneering a new approach to cure chronic pancreatitis through innovative outcome-based financing. By collaborating with investors and payers, the organization hopes to discover life-altering therapies for patients. After years of meeting the needs of their growing community, Mission: Cure is attaining status as a 501(c)(3). The RARE Patient Impact Grant will support their efforts by assisting in the hiring of employees, building fundraising capacity and organizational infrastructure.
Established out the need to connect adults living with chronic illness and rare disease, Our Odyssey exists to provide social and emotional support in the hope of improving quality of life. With the RARE Patient Impact Grant, Our Odyssey plans to attend more conferences and networking opportunities to expand their reach in the rare disease community. In addition, funds will also support in-person and virtual meetups.
Parents of Scleroderma Kids – Scleroderma Foundation, Inc.
As a leading patient support and advocacy nonprofit focused on the needs of the scleroderma community, the foundation is guided by its three-fold mission, support, education, and research. Together with “Parents of Scleroderma Kids,” the Scleroderma Foundation will use the RARE Patient Impact Grant to provide peer-to-peer support to families and children living with scleroderma. This includes developing dedicated web pages, creating age-appropriate educational materials for children, and enhancing digital and social media tools to disseminate content.
Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.
The Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc. (PFIC) is a parent-led organization serving the needs of the PFIC community by improving the lives of patients and families affected by progressive familial intrahepatic cholestasis. With the support from the RARE Patient Impact Grant, The PFIC will re-design its website to further foster the growth and development of the organization and advocacy efforts. The newly designed website will have a stronger focus on education, awareness, advocacy, research development, and include a self-report registry.
SATB2 Gene Foundation
The SATB2 Gene Foundation supports the SATB2-associated syndrome community by enriching the lives of patients and families through support, research and education. With the support from the RARE Patient Impact Grant, the SATB2 Gene Foundation will strengthen the base of the organization through the development of a closed parent portal, housing sensitive documents that can be organized before public distribution. In addition, the grant will also support nonprofit financial management training for the foundation’s board.
Stone Soup Group
Stone Soup Group is a statewide nonprofit that provides information, support, training, and resources to assist families caring for children with special needs in the state of Alaska. Staffed almost entirely by parents or family members, the organization assists families as they navigate the complexities that accompany a diagnosis. The Stone Soup Group will utilize the RARE Patient Impact Grant by using the funds to develop a Rare Care Informed Family Navigation training curriculum. This program will help build capacity among staff to better support families, patients and professionals who care for Alaskans living with rare disorders.
T.E.A.M. 4 Travis (Together Ending Asplenia Mortality)
T.E.A.M. 4 Travis was founded to prevent families from losing children to the rare genetic birth defect, isolated congenital asplenia (ICA). The organization is focused on fundraising, creating a research network, increasing the medical community, public awareness and developing a genetic test for quicker diagnosis. The RARE Patient Impact Grant will be used to enhance the organization’s infrastructure, including additional website support, donor management software and nonprofit management education for executives.