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Welcome to the website of United Parent Projects Muscular Dystrophy, the worldwide group of Duchenne Patient and Parent Organisations. 


Duchenne Patient Advocates may be confronted with different challenges on a national level, but worldwide we fight for the same goal: to improve the lives of boys and men affected with Duchenne Muscular Dystrophy (DMD).

Every month, a blog on news, updates and events in the DMD field will be posted here.
Annemieke Aartsma-Rus PhD, Professor of Translational Genetics, has written a blog on CRISPR technology. Please click here to read the blog.


World Duchenne Awareness Day

On September 7, 2016 the third World Duchenne Awareness Day has taken place. The 7th day of the 9th month has been chosen to represent the 79 exons in the dystrophin gene. World Duchenne Awareness Day is initiated by United Parent Projects Muscular Dystrophy and made possible by the Duchenne community worldwide. This time more than 40 countries and 90 organizations were involved and for the second year we celebrated under the High Patronage of the European Parliament.

Here’ s what happened this time:

Social and local media
World Duchenne Awareness Day now has over 12.000 likers on Facebook. Profile pictures on social media accounts were changed into the red balloon.
The Manifesto was shared and on Twitter #WDAD16 was used everywhere.
Everybody talked about WDAD: in local newspapers, on radio stations and television channels.

Duchenne Balloon
3940 Virtual Duchenne Balloons have been donated to support Early Diagnosis programs: identifying and communicating early signs of DMD globally is the key to Early Diagnosis. Besides giving parents the opportunity for good parenting, an earlier diagnosis of DMD will allow timely access to genetic counselling, standards of care and clinical trials.

Early Signs
Duchenne parents from all over the world shared videos of their sons around the period of diagnosis. Thanks to all parents the powerful video Early Signs has been created. Early recognition of the obvious signs is the best instrument we have at the moment. Besides giving parents the opportunity for good parenting, an earlier diagnosis of Duchenne Muscular Dystrophy will allow timely access to genetic counselling, standards of care and clinical trials. Click here to watch the video Early Signs.

Why Early Diagnosis is important
Duchenne parents explain why is Early Diagnosis is important. See all 13 video messages here.
 
Pope Francis 
On WDAD2016 Pope Francis was in Rome with the Italian Parent Project
and a WDAD t-shirt! He shared the following personal message with the community:”I send love to all the boys all over the world!”

Red balloons everywhere!
Duchenne Balloons were released in over 18 countries, see this world map. In meetings and at conferences speakers talked about WDAD.

Red buildings
38 iconic buildings and landmarks across Australia turned red this World Duchenne Awareness Day to raise awareness of Duchenne Muscular Dystrophy.