About U.R. Our Hope
Who We Are
U.R. Our Hope is a registered 501 (c)(3) non-profit organization that assists individuals and their families on their journey to diagnosis,or helps them navigate the healthcare system with a rare diagnosis. Our mission is to serve individuals with undiagnosed and rare disorders through education, advocacy, and support in order to bring hope through knowledge, empowerment, and healing. We assist families in the Austin area, and throughout Texas, the United States and beyond.
How U.R. Our Hope Helps
U.R. Our Hope helps families by researching medical facilities and genetic tests. We connect families with physician’s and facilitate referrals whenever possible. We also help families enroll in clinical studies at some of the nation’s leading research programs and facilities. To date, many of our families have been seen at the National Institutes of Health’s Undiagnosed Disease Program, which only sees about 200 cases annually, and several have also enrolled in TGEN’s Center for Rare Childhood Disorders. Sometimes, these families just need to know they are not alone and need support along the journey. We host monthly meetings in the Austin area and have a closed Yahoo group for virtual support to those who are not in Texas.
Currently, we use the donations we receive to support our families along the journey by:
– Providing meals during hospitalization or times of crisis
– Providing gas/meal cards to families traveling out-of-town or out-of-state for medical appointments
– Covering a portion of funeral costs/arrangements when families lose a child
– Covering costs of record requests, shipping, and application fees for clinical studies