Cheers for Rare: Rare Disease Day Celebration

107 East Center Street,Kyle TX 78640

25 February, 2023

Description

Make plans to join U.R. Our Hope on Saturday, February 25, 2023 from 1pm to 5pm at The Railhouse in Kyle for our annual Rare Disease Day Celebration. Family friendly event with music, raffle, games, and food trucks on site. Please contact us to donate an item or to sponsor. ++++++++++++++++++++++++++++++ // Who is U.R. Our Hope? 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. //What is 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 7,000 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.