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601 E Whitestone Blvd, Ste 500, Bldg 5, Cedar Park, Texas 78613
Join us for our annual Rare Disease Day Celebration!
Cheers for Hope will be held at Whitestone Brewery in Cedar Park!
Saturday, February 24, 2018 — 1pm to 5pm
This is a family friendly event. Entry is FREE. We will be accepting donations for some activities, there will be a donation wall, and we will have lots of prizes to raffle! There will also be games for everyone, music, and a special performance by Poor Yorick. Food available from Tryst Food Truck!
Be a Rare Hero! — We will also be decorating superhero capes and masks for the kids. Let's celebrate all of our rare heroes! [Suggested Donation $5 per cape]
// Who is U.R. Our Hope?
U.R. Our Hope is a registered 501 ©(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?
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 touch 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 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.