Hope for the Undiagnosed and Rare at any age or stage PO Box 50152 Austin, TX 78763
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Africa

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Water Problem in Africa

Water Problem in Africa

Water Problem in Africa

Water Problem in Africa

U.R. Our Hope assists families on the journey to diagnosis and helps them navigate the healthcare system with a rare diagnosis.

ABOUT US

Recent Posts

  • Self-Advocacy for Kids by Willa Fischer

    March 19, 2026

  • Support U.R. Our Hope at the Austin Marathon

    August 18, 2023

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Rare Disease Day is a Global Day of Awareness and Rare Disease Day is a Global Day of Awareness and Advocacy for 300 million individuals living with a a rare disease worldwide. It is recognized on the last day of February, which is usually February 28th - except in a Leap Year when it is recognized on the ultra rare date of February 29th. That makes this year’s @rarediseasedayofficial extra special! U.R. Our Hope is an Austin-based non-profit dedicated to serving those with both undiagnosed and rare disorders. With more than 8,000 recognized rare diseases, it can take up to 7 years to receive a diagnosis. U.R. Our Hope follows individuals during that undiagnosed period on their diagnostic journey to a rare diagnosis and continues to provide support once a diagnosis is received. We connect families with specialists, assist with research on their conditions and available studies, and education on genetic testing. Since many rare diagnoses do not have a national organization, U.R. Our Hope has built a community where individuals connect through their experiences. Even with vastly different medical conditions, there are so many overlapping aspects of the diagnostic journey that creates bonds between our families. U.R. Our Hope assists these families by providing gas and meal cards to those who must travel to see specialists, provides respite in times of hospitalization or crisis, helps families apply for the nation’s top research programs, and provides local support through family meetings. Today and everyday we celebrate the families of U.R. Our Hope! Take a moment to swipe through and meet a few of the people who will always hold a special place in our hearts. To support our cause, you may donate via PayPal at http://tinyurl.com/urohdonate · · · #urourhope #rarediseaseday #rarediseaseday2024 #undiagnosed #raredisease #advocacy #austintx #costellosyndrome #rubinsteintaybisyndrome #trisomy5q #mitochondrialdeletionsyndrome #joubertsyndrome #stxbp1
Mark your calendars now and join us on Tuesday, Ma Mark your calendars now and join us on Tuesday, March 5th for @fishcitygrill - Georgetown's 1st Tuesday benefitting U.R. Our Hope! Stop by anytime to dine-in or place an order for carryout and 15% of all sales will be donated to our mission of serving undiagnosed and rare families right here in Central Texas and beyond.
Lucky Station 13 in action! Had a blast volunteeri Lucky Station 13 in action! Had a blast volunteering today for the @austinmarathon with @austintriclub - we appreciate everyone who braved the cold to join us. And Congrats to our Team U R Our Hope participants who ran the 5K, Half, and Full Marathon! 👏🏽👏🏽
Congrats Team U.R. Hope Runners in the @austinmara Congrats Team U.R. Hope Runners in the @austinmarathon !! 👏🏽👏🏽👏🏽 We had participants in the 5K, Half, and Full Marathon!
Mile 13 Volunteer Station U.R. Our Hope and @austi Mile 13 Volunteer Station U.R. Our Hope and @austintriclub ready for the @austinmarathon today! Good luck to all the runners 🏃🏽‍♀️🏃🏾‍♂️🏃🏽‍♀️🏃🏾‍♂️
Help us wish Team U.R. Our Hope GOOD LUCK tomorrow Help us wish Team U.R. Our Hope GOOD LUCK tomorrow at the Austin Marathon! We have runners participating in the 5K, Half Marathon, and Full Marathon!! Leave some words of encouragement below. And help us add to our playlist we'll have going at our Volunteer station. Leave the name of a song that hypes you up so we can keep up the runners motivation! 💃🏽🕺🏽
As Team U.R. Our Hope gears up to run in the Austi As Team U.R. Our Hope gears up to run in the Austin Marathon on this Sunday 2/18, our volunteer team could use a few more hands! Volunteer Duties: 💧 Setting up the water and Nuun sports drink stations 🏃‍♀️ Passing out water/sports drinks to runners as they come by 🎉 Cheering on the runners 🗑 Cleaning up/Picking up trash after the race Our station will be at Dobie (2021 Guadalupe) and hours needed are 6:30 am - 11:30 am Sign up today at the link in our bio! Minors are welcome to join with a parent/guardian present. Feel free to reach out if you have any questions.
We had a wonderful time celebrating with you all t We had a wonderful time celebrating with you all today! Thank you to everyone who joined us in person and those who joined virtually through our silent Auction. Check your emails for final auction results. You can pay online and reach out to us for item pickup. Good luck to all the Team U.R. Our Hope participants running next week in the Austin Marathon!! 🏃🏻‍♀️🏃🏼‍♂️🏃🏽‍♀️🏃🏾‍♂️
We have some Team U.R. Our Hope merch still availa We have some Team U.R. Our Hope merch still available! Shirts Available 3 - Adult Size 2XL 2 - Adult Size XL 1 - Adult Size L 3 - Youth Small 3 - Youth Medium 2 - Youth Large 2 - Youth XL Adult Shirts are $20 Youth Shirts $15 Cooling Towel $10 Headband $8 Drawstring Bag $8 Complete Merch Bundle includes shirt, cooling towel, headband, and drawstring bag! Adult Size Bundle $35 Youth Bundle is $30 Message us to order. Can meet in Austin area or add $5 for shipping.
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Contact Info

If you or your child are in need of assistance on the journey, please fill out our contact form or email our medical liaison.
Email: mary@urourhope.org

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  • Home
  • About Us
    • Our Families
  • Events
    • Evening of Hope Gala
    • Ready, Set, Rare!
  • Beyond the Diagnosis
  • Media
  • Donate
    • #GivingTuesday
  • Resources
    • Medical Flights
    • Finding a Diagnosis
  • Blog
  • Contact Us