U. R. Our Hope

Who

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 health care system with a rare diagnosis. Their 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. They assist families in the Austin area, and throughout Texas, the United States and beyond.

With the medical advancements and technology available today, it is hard to believe that anyone could live without a diagnosis, but this is a reality faced by many 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 to help these families find answers quickly and efficiently.

What

U.R. Our Hope helps families by researching medical facilities and genetic tests. They connect families with physician’s and facilitate referrals whenever possible. They also help families enroll in clinical studies at some of the nation’s leading research programs and facilities. To date, many U.R. Our Hope 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. U.R. Our Hope hosts monthly meetings in the Austin area and have a closed Yahoo group for virtual support to those who are not in Texas.

Currently, they use donations to support 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, they 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

U.R. Our Hope also hopes 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. The Director of Advocacy 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. U.R. Our Hope would like to be the organization behind the network and this would require a significant amount of money and partnerships.

Advocacy

U.R. Our Hope helps to advocate for patients with undiagnosed and rare disorders by helping to promote legislation that will benefit families. The Director of Advocacy is very active in legislative efforts and has even co-authored a bill that would create a network as a tool for physicians to register their undiagnosed cases and find other physicians handling similar cases in order to promote real-time collaborations focused on finding a diagnosis and improving the care and outcomes of their patients.

Location

PO Box 50152
Austin, 78763, TX

Accessible Location: No

Details

Type of Organization	Nonprofit (501c3)
Categories	Advocacy, Emotional Support, Financial, Training, Transportation, Other
Services offered in Spanish?	No
Newsletter?	yes
Child Care Available?	No
Age Range	All Ages
Disability Categories
Does this organization belong to all disabilities?	No
This organization belongs to these diagnoses
Is this a statewide service?	yes
Website	http://www.urourhope.org
Contact Name	Mary
Email Address	[email protected]
Phone Number

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