Ready Set Rare: U.R. Our Hope Rare Disease Day & Austin Marathon WrapParty

Sunday, February 23, 2025 | 2pm to 5pm

Join us as we kick off Rare Disease Week and Celebrate those who ran for Team U.R. Our Hope in the Austin Marathon!

This event is family friendly with music, cocktails, hors d’oeuvres, & silent auction benefitting U.R. Our Hope. Tickets are $10 for adults and children are free.

U.R. Our Hope is an Austin based non-profit dedicated to serving individuals with undiagnsoed and rare illnesses on the journey to diagnosis and helps them navigate the healthcare system with a rare diagnosis. With over 8,000 known diseases, it can take up to 7 years and over a dozen specialists to find answers and treatment. U.R. Our Hope works with individuals to facilitate specialist appointments for genetic testing or connect them with specialists for their specific condition or symptoms. We work with children and adults in the Central Texas area and beyond.

//What is Rare Disease Day?

First, what is a Rare Disease?

A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing.

80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.50% of rare diseases affect children.

// Rare Disease Day

Rare Disease Day takes place on the last day of February each year.The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.There are over 8,000 known rare diseases. Individuals affected by a rare disease may be relatively small, but the number of rare disease patients with any diagnosis is quite large. In fact, 1 in 10 Americans is living with a rare diagnosis, so it is quite likely someone you know and care about is part of the Rare population.

For most patients, the lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. (The average length of time to diagnosis is up to 7.6 years!) Also the need for appropriate quality health care engenders inequlities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.

Host or Publisher U.R. Our Hope