2016 ANNUAL RARE DISEASE DAY
be a part of the experience
All are welcomed to get involved in this year's World Rare Disease Day on Monday, February 29, 2016! Join the movement! Advocate for the over 350 million with a RARE disease today! Click here to see how to get involved.
 World Rare Disease Day is an annual observance to raise awareness for rare disease and improve access to treatments and medical representation for individuals with rare disease and their families. Created by European organization EURORDIS in 2008, this day is celebrated on the last day of February each year. The 9th annual World Rare Disease Day will be held on Monday, February 29, 2016. On this day, various activities take place globally. |
Last year, volunteers from our community participated in this annual event by telling their story in the 'Share Your Story Through Social Media' part of this event.
There are millions of technology users who access social media everyday, this makes social media one of the best avenues to share your story and spread awareness. The new RAREToolkit: How to Promote Your Rare Disease Story Through Social Media will provide hands on tips and how-to's, from how to use some of the most popular platforms available to, how to effectively share your story through them. Check it out here.
Social Media Awareness - Patients, advocates, and industry alike can grow social awareness by sharing photos, information and events with Global Genes' Facebook, Twitter, and Instagram. Supporters can tag their photos or posts with hashtags #WearThatYouCare, #WRDD2016, and #CareAboutRare to help draw attention to their content. Additionally, supporters can visit www.globalgenes.org/
María
María de la TorreFounder and Executive Director
A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
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2 comments:
If rare disease day raises money then have they or will they give some grants to tmau research?
By offering rare disease communities to raising awareness, this event assists the Trimethylaminuria community in getting publicity in hopes that we can raise our own funding for research.
The money that is raised by them is used for lobbying efforts to have laws passed to help Rare Disease patients and their communities achieve their goals. For example of some of these efforts, please click on the following link and scroll down to read all posts.
http://www.bloodbornebodyodorandhalitosis.com/search/label/NORD%20e-News