Represent on Rare Disease Day 28 FEB 2018!

WHAT IS RARE DISEASE DAY AND WHY?

WHAT? WHY? WHO? WHERE? WHEN?

It's that time of year again, when sufferers of rare diseases worldwide come together to raise awareness throughout the world. This annual event is intended to call the attention of politicians who can create laws and modify laws to make it possible for persons with rare diseases to get treatment sooner than later. It also calls the attention of National Institutes of Health systems of many countries around the world by raising awareness to the fact that there is a great need for research grants in order to be able to carry out research into rare diseases, including TMAU and other yet-to-be-discovered uncontrollable odor conditions.

Each sufferer around the world can participate in whatever capacity he or she would like, or in as many events as possible. Below are a few of ways you can contribute to this very much needed cause.

Rare Disease Day 2018 Virtual Race!

Akiya Browning
MEBO Community Outreach Director

Our new MEBO Community Outreach Director, Akiya Browning, who is organizing Team MEBO Research to participate in the Rare Disease Day 2018 Virtual Race! How cool is that? Here's a quote from Akiya as she would like invite you to join her,

There are many initiatives taking place around the globe this month to raise awareness for Rare Diseases, including the Rare Disease Day 2018 Virtual Race! Anyone can participate in this Virtual 5k, 10k, or Half Marathon, and sign-ups are open right now! Join team MEBO Research from the sign-up page to raise funds for TMAU and other rare diseases! https://endurancecui.active.com/event-reg/select-race?e=50015653&rf=5f68b998b426466f972fa61246886ebf


akiya.browning@meboresearch.org

Tell your story for Rare Disease Day 2018!

Click on Icon to tell your story!

Every year, sufferers from our community volunteer to tell their story of what it is like to live with an uncontrollable odor condition. Raising Awareness is a MUST for our community. Otherwise, society at large simply things that the odor is the result of poor grooming. This ignorance tends to enrage those who do not understand that a sufferers goes to great lengths to try to not offend, and thus, they end up behaving like bullies towards sufferers. By telling your story in your own language, you can raise awareness to educate the public. You can write your story, post your photos, or do a video!

'7 WAYS TO PARTICIPATE IN RARE DISEASE DAY 2018'

Browse through the '7 WAYS TO PARTICIPATE IN RARE DISEASE DAY 2018' page to get ideas of what fits best for you to join in!

These activities can be done anywhere in the world in any language. Just take a look at the Rare Disease Day Events Worldwide! So far, there are 193 events in 63 countries scheduled. So please, get involved by joining Akiya in supporting her new directorship position in MEBO and/or by posting your event!

Check out MEBO's involvement in Rare Disease Day throughout the years (scroll down to see all posts and click on "Older Posts" at the bottom of the page).

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)

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