30% of Children with Special Needs do NOT have a definitive diagnosis.

On average, it takes a family 7 years and many specialists to find a rare diagnosis. With over 7,000 rare conditions, the journey is not always quick, nor is it easy. U.R. Our Hope helps families on the journey to diagnosis and helps them navigate the healthcare system with a rare diagnosis. We support families on every step of the way. We provide gas and meal cards for those traveling out-of-town or out-of-state for medical visits, provide respite during hospitalizations, provide meals during times of crisis, and cover burial funds when necessary. Did you know 30% of children with a rare diagnosis do not live to see their fifth birthday? Give a family hope today and make a donation.

Monthly Meetings

Monthly meetings allow us to provide face-to-face support for families by gathering to share research and resources. We help families get out in to the community with a supportive group who understands the journey.

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Upcoming Events

U.R. Our Hope hosts community events to raise awareness for those with Undiagnosed and Rare Conditions. We are always looking for new locations and local businesses to partner with to support our families.

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Learn More

Learn more about our organization and the families we help. We are grateful to our local media and online publications who support our mission and share the stories of so many.

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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.

What We Do

  • Hold monthly meetings for face-­to-­face support
  • Provide meals during hospitalization
  • Facilitate referrals for diagnostics and treatments
  • Provide gas/meal cards to families traveling out-of-town or out-of-state for medical visits
  • We may connect families with financial resources to cover medical visits



We help to advocate for patients with undiagnosed and rare disorders by helping to promote legislation that will benefit our families. Our 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.




Board of Directors

Mary Elizabeth Parker, Medical Liaison & Co-founder


Kailee Johnson, Director of Community Relations


Vanessa Vaughan, Director of Communications


Deborah Gordon, Director of Finances


Advisory Board

Isabel Huerta

Betsy Furler

Debra McDowell