Health & Fitness
World Rare Disease Day
Feb 28 is Rare Disease Day . Wear your Jeans to show that you care ~ Hope is in our Genes !
Please note: the last day in February, this year on Thursday Feb 28th, is World Rare Disease Day. One in ten people live with a rare disease. The Global Genes Project http://globalgenes.org/ has asked that we wear jeans in honor of those with rare genes, for 80% of these rare diseases are caused genetically. There are 7,000 rare diseases, and less than 400 treatments approved by the FDA for these 7,000 diseases. 50% of those affected are children. Only 15% of rare diseases have organizations or foundations providing support or doing research. This means that most people do not have adequate support or treatment as they face the unique struggles of living with their rare disease.
About three years ago my niece has been diagnosed with leukodystrophy called Vanishing White Matter (VWM). Until 2009 I've never heard of leukodystrophy ...This year I'm organizing research fundraiser and we are calling it " Find a Cure for VWM" - see the event page: https://www.facebook.com/events/577017348993761/?ref=ts&fref=ts
Plus while searching for cure we are bringing awareness about leukodystrophy VWM/CACH... see the facebook page..https://www.facebook.com/pages/Find-a-Cure-for-VWM/213513405456078?ref=stream
"If all people with "Rare Diseases" lived in one country, it'd be the world's 3rd most populus country," according to the Global Genes Project. It's time for those voices to be unified, and this can happen partly through stations such as yours raising awareness.
Find out what's happening in Palosfor free with the latest updates from Patch.
The Global Genes Project has a wealth of information about Rare Diseases and is actively promoting World Rare Disease Day. Global Genes Project can also be found on Facebook - https://www.facebook.com/globalgenesproject?ref=ts&fref=ts
Also - you can join Team Noah in Chicago - and Support Rare Disease Advocacy, hear from Doctors who treat and research rare diseases, find out about Comer Children's new Immune Deficiency Clinic, learn about Be The Match Registry and how you can help save someone's life who is fighting a rare disease, check out the Make-A-Wish organization and their Jeans for Genes initiative, and finally learn more about patient advocacy while participating in some fun activities as well. Event will take place in the Knapp Center for Biomedical Discovery just on the other side of Comer Children's Hospital. For more information please see this event page: https://www.facebook.com/events/523984267623695/540029142685874/?notif_t=plan_mall_activity
