Community of Hope We connect rare disease patients across the state with each other to build their networks and share their experiences.

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Rare Hope Relief Program Healthcare is expensive, and there are even more out-of-pocket costs when living with a rare disease. Many Oklahoma families have been waiting years to move up on state-level waiver program waiting lists for respite care. Hues for HOPE provides patient assistance to Oklahoma rare disease patients impacted by a rare disease. Rare Hope Relief is a small step toward filling the needs of hundreds of patients facing medical and unexpected costs from their disease journey.​

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Art for the Heart Our art experience(s) for Oklahoman families facing rare diseases fills a need for social connection and provides a space for the emotional and mental processing of trauma inherent in battling a rare disease. 

 

State and Federal Advocacy Rare disease patients and caregivers have unique advocacy needs and stories to share about their experience with rare diseases. Hues for HOPE is the only group convening patients and caregivers to participate in local, state, and federal advocacy programs. Hues for HOPE advocacy efforts and connections with state and federal legislators in Oklahoma through partnerships with the National Organization for Rare Disorders (NORD) and the EveryLife Foundation for Rare Diseases encourages system change through legislative advocacy.​

 

TeleECHO Hues for HOPE is collaborating with Oklahoma State University Health Science Center’s (OSU-HSC) Project ECHO program to initiate a pilot TeleECHO project focused on rare disease education and research, treatment, and awareness. Rare diseases are a public health crisis, and understanding the complexities of the research, diagnosis, treatment, and impact of rare disease diagnosis is paramount for physicians, allied healthcare professionals, and other research and medical professionals.

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Oklahoma Rare Disease Summit The Hues for HOPE Oklahoma Rare Disease Summit provides Oklahoma families a rare opportunity to share their experiences with local providers. The Summit will include Keynote and breakout sessions for providers, patients, and caregivers.

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Rare Partnership Grant Hues for Hope partners with the Global Foundation for Peroxisomal Disorders to provide local support and services to rare patients in Oklahoma, especially those with peroxisomal disorders. We supply an annual grant opportunity to the GFPD contingent upon availability of funds.