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Hues for HOPE
Our Mission
Hues for HOPE convenes artists and our Oklahoma community to inspire joy in families facing rare diseases through art, family support, and advocacy.
Our Work
Hues for HOPE’s outreach initiatives are designed to promote social connection, community, and well-being for patients, families, and caregivers. There are many barriers to healthcare for Oklahomans, especially those living with complex medical needs due to a rare disease. All our programs
are free to Oklahomans impacted by rare diseases.
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.
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.
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.
Art for the Heart
Our therapeutic art experiences for Oklahoman families facing rare diseases fill a need for social connection and provide a space for the emotional and mental processing of trauma inherent in battling a rare disease.
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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