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.

With the medical advancements and technology available to us today, it is hard to believe that anyone could live without a diagnosis, but this is a reality faced by many of our families and countless others across the world. There are currently over 7,000 rare disease and the average journey to diagnosis is SEVEN YEARS!! Many of these disease are rapidly progressing and some individuals cannot afford to wait seven years. Sadly, many children do not live to see their 5th birthday and their families are left struggling for answers and fear of the future for other children. It is imperative that we help these families find answers quickly and efficiently.

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

In the future, we would like to be able to support families in many different ways, which include:

• Covering the cost of medical visits not covered by insurance
• Covering the cost of genetic testing
• Covering travel costs (air/bus fare, hotel accommodations, meals, etc) for medical visits and for families to attend annual conferences
• Covering costs for medical and therapy equipment

We also hope to create and sustain a national network of Undiagnosed Patients for use by physicians. Currently, there is no national database storing the valuable information Undiagnosed Patients present to the medical community. The creation of a national network would allow physician’s to input their patient’s cases (symptoms and not personal identifying information) and compare them to other cases in the United States. If a match is found, a doctor would then be able to contact the treating doctor of the matched patient to create real time collaboration. Our Director of Advocacy, Heather Long, has worked with Representative John Carter in Texas to create legislation to help create this network, but the bill has failed in the last 3 times it has been presented. Representative Carter’s office continues to support this bill as does U.R. Our Hope. We would like to be the organization behind the network and this would require a significant amount of money and partnerships.