Crowdmed: A New Partner in Hope

As you all know, here at U.R. Our Hope, we are committed to serving the Undiagnosed and Rare communities in the best capacity possible, and we are not so arrogant to think that we can do it all on our own. We are proud of the connections and partnerships we have created along the way that have…

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Fundraiser for Undiagnosed Documentary

We had an incredible event last night at Upstairs on Trinity for the Undiagnosed: Medical Refugees Documentary. We thank everyone who came out to support us and made the evening memorable! We started off the night with an introduction from our Director of Communications, Vanessa Garcia, who shared the mission of U.R. Our Hope and…

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After the Diagnosis: Radio and TV Appearance

Tomorrow, June 6th, will be a very exciting day for U.R. Our Hope! Our friend, Hari Khalsa, “The Healthcare Whisperer” has again invited some of our families to her radio show to discuss how the journey changes after a diagnosis has been found. Prior to the radio show, Dr. Parker, Hari and one of the…

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Press Release: U.R. Our Hope Fundraising Weekend

For immediate release… Local non-profit, U.R. Our Hope, kicks off fundraising weekend with filming for upcoming documentary about The Undiagnosed U.R. Our Hope is an Austin non-profit that works with families and individuals with rare and undiagnosed medical disorders. This weekend marks their inaugural fundraising gala which begins with a Patient Advocacy Conference on Saturday,…

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Vote for U.R. Our Hope to Speak at SXSW!

When you hear mention of South by Southwest (SXSW), you typically think of the large scale music festival that hits Austin every spring.  However, SXSW has grown dramatically and there are now many more components to the annual festival. We have a fantastic opportunity to speak at SXSW this year during both the EDU and…

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UMDF Family Meeting with Dr. Cohen

n conjunction with the Annual Texas Parent to Parent Conference in San Marcos this July, we are excited to have Dr. Cohen coming in to speak with families! Dr. Bruce Cohen will be presenting on Mitochondrial Disease and there will also be time for a Q&A Session where parents will be able to ask Dr.…

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Survey on Parental Uncertainty

We have recently been contacted by Ellen Mcnamara, a Genetic Counseling Student at the Johns Hopkins and National Human Genome Research Institute Genetic Counseling Program. This student is conducting a survey to research her thesis about the uncertainty parents face when raising a child with an undiagnosed medical condition. For this survey, parents who have…

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Fundraiser: Chick-Fil-A Spirit Night

Please join us for our first Spirit Night with Chick-Fil-A THIS Thursday, June 20th from 5 pm to 8 pm! On Thursday, Chick-Fil-A will donate 10% of all sales to U.R. Our Hope for everyone who mentions our organization when they place their order.  Both Dine-in and Drive-thru receipts count toward this event, so stop…

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A Child’s Rare and Undiagnosed Illness: A Mother’s Journey

Today, at 5:00pm, Our co-founder and Director of Advocacy, Heather Long, will be interviewed by Hari Khalsa, The Healthcare Whisperer, live on her radio blog show. Heather will be discussing her journey with her son Cal who passed away in 2006 at five years old to an undiagnosed disease.  Since her son’s death, Heather has…

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UMDF Energy for Life Walkathon

We are excited to join our friends at the United Mitochondrial Disease Foundation of Central Texas in their annual Energy for Life Walkathon! The goal of the UMDF walkathon is to raise awareness as well as support those who are fighting mitochondrial disease in our area. Whether you, someone you love, or someone you know is…

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