News Archive • World Duchenne

Showing all 30 results

Applications open for Duchenne Patient Academy 2021
18/10/2021

At Duchenne Patient Academy, DMD and BMD patient advocates receive training to build a strong base for current and future global advocacy.

STRIDE study data on Translarna ataluren

STRIDE data shows Translarna delays loss of ambulation by more than five years in nonsense DMD boys
23/09/2021

Data shows Translarna delays loss of ambulation by more than five years in nonsense DMD boys.

The Akari Foundation for Duchenne muscular dystrophy affected in Texas, United States

The Akari Foundation joins World Duchenne Organization
16/09/2021

The Akari Organization supports low-income Hispanic families with people affected by Duchenne in San Antonio, Texas.

ONLINE EVENT: ADULT LIFE & DUCHENNE
14/09/2021

The recording from the online event 'Adult Life & Duchenne' is now available for rewatching. Interpretation available in multiple languages.

World Duchenne Awareness Day highlights a year-round effort to improve adult life in Duchenne
10/09/2021

All World Duchenne Awareness Day 2021 events involving thousands of people across the world, under the theme ‘Adult Life & Duchenne’.

Consensus Guidelines for Adult Duchenne Care
08/09/2021

The Journal of Neuromuscular Diseases published the consensus guidelines for adult Duchenne care.

How Patient Organizations Can Drive FAIR Data Efforts to Facilitate Research and Health Care
01/09/2021

During the second FAIR Data Meeting for Duchenne, 120 participants from 22 countries discussed how they could drive FAIR data efforts to facilitate research and healthcare.

Adam Peska to win gold medal in Boccia at Tokyo Paralympics
01/09/2021

Adam Peska from the Czech Republic won a gold medal in individual boccia BC3 at the 2020 Summer Paralympics in Tokyo, Japan.

Philip Jönsson first person with Duchenne MD to win gold at Paralympics
30/08/2021

Today, Philip Jönsson won the gold medal in the mixed 10m air rifle standing SH2 event at the 2020 Summer Paralympics held in Tokyo, Japan.

ENMC workshop to refine recommendations for female carriers
25/08/2021

The aim of this ENMC workshop were to raise priority and need for clinical and research focus on DMD female carriers. Report now available.

Online event on Adult Life & Duchenne
23/08/2021

The World Duchenne Organization is organizing an online educational event on Adult Life & Duchenne.

Meeting on the use and development of wearables and other digital outcomes for Duchenne
29/07/2021

The World Duchenne Organization organized a meeting about the use of wearables, and other digital outcome measures, in Duchenne and Becker Muscular Dystrophy (DMD and BMD).

EURORDIS Black Pearl Awards 2022
14/07/2021

Nominations for the EURORDIS Black Pearl Award 2022 are now open!

Adult Life & Duchenne
13/07/2021

On September 7, the World Duchenne Organization will be hosting an online event where experts share their stories and experiences surrounding DMD/BMD and adult life.

EPF Congress 2021: Digital Transformation of Healthcare
08/07/2021

From October 26 - 29, the European Patients’ Forum (EPF) is organizing a congress on the digital transformation of healthcare.

First International Neonatal Screening Day
28/06/2021

Today is the First International Neonatal Screening Day. Early diagnosis is of great importance for everybody with medical problems.

Duchenne Care Conference 2021 successfully concluded
14/06/2021

During the Duchenne Care Conference, top experts share their experience on specific topics of Duchenne (and Becker) care.

Duchenne Ukraine announces international children’s drawing competition
09/06/2021

Duchenne Ukraine opens an international children's drawing competition to discover and celebrate talented children living with Duchenne.

World Duchenne Awareness Day 2021
07/06/2021

September 7 is World Duchenne Awareness Day. This year's theme that deserves more attention is ‘Adult Life & Duchenne’.

Dr Imelda de Groot Award
03/06/2021

During the Duchenne Care Conference, taking place June 1-4 online, the Dr Imelda de Groot Award was announced. The Award was revealed by Elizabeth Vroom, chair of the World Duchenne Organization.

Share4Rare: Setting the path for next generation data sharing in rare diseases
28/05/2021

Share4Rare shares the findings and outputs of their project, setting the base for the next generation of data sharing in rare diseases.

DMD Care Association Romania joins World Duchenne Organization
13/05/2021

DMD Care Association provides support for children and families affected by Duchenne in Romania. They are World Duchenne Organization member.

World Duchenne Awareness Day 2021 theme announcement
07/05/2021

On World Duchenne Awareness Day, we raise awareness for Duchenne and Becker Muscular Dystrophy. The 2021 theme is Adult Life & Duchenne.

Duchenne Family Support Group joins WDO
06/05/2021

In 1987, a small group of parents regularly met at their clinic appointments. Now, they join the global Duchenne family support community.

Duchenne Care Conference 2021
03/05/2021

Online Duchenne Care Conference June 1 - 4 for WDO Members where global experts share their knowledge on specific care topics.

Working Group for Newborn Screening in Duchenne
30/04/2021

The World Duchenne Organization starting a working group to create tools and resources to advocate for newborn screening in Duchenne.

Summer Training Course for Young Patient Advocates (STYPA)
08/04/2021

Online training course for young patient advocates to receive training and guidance to set up their own patient advocacy effort.

Duchenne Australia joins World Duchenne Organization
06/04/2021

Australia's youngest Duchenne Muscular Dystrophy organization was launched on World Duchenne Awareness Day 2020. Now, they joined the World Duchenne Organization.

España es la primera en abrir un estudio para investigar la DMD / DMB y la salud mental
04/04/2021

España es la primera en reclutar niños y adultos #Duchenne y #Becker para el proyecto BIND dirigido a investigar el impacto de DMD/DMB en la conducta y función cognitiva.

Describing medical terms in medicines use
22/03/2021

The European Medicines Agency (EMA) published an online resource describing medical terms in medicine use related to side effects.

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Applications open for Duchenne Patient Academy 2021
18/10/2021

STRIDE data shows Translarna delays loss of ambulation by more than five years in nonsense DMD boys
23/09/2021

The Akari Foundation joins World Duchenne Organization
16/09/2021

ONLINE EVENT: ADULT LIFE & DUCHENNE
14/09/2021

World Duchenne Awareness Day highlights a year-round effort to improve adult life in Duchenne
10/09/2021

Consensus Guidelines for Adult Duchenne Care
08/09/2021

How Patient Organizations Can Drive FAIR Data Efforts to Facilitate Research and Health Care
01/09/2021

Adam Peska to win gold medal in Boccia at Tokyo Paralympics
01/09/2021

Philip Jönsson first person with Duchenne MD to win gold at Paralympics
30/08/2021

ENMC workshop to refine recommendations for female carriers
25/08/2021

Online event on Adult Life & Duchenne
23/08/2021

Meeting on the use and development of wearables and other digital outcomes for Duchenne
29/07/2021

EURORDIS Black Pearl Awards 2022
14/07/2021

Adult Life & Duchenne
13/07/2021

EPF Congress 2021: Digital Transformation of Healthcare
08/07/2021

First International Neonatal Screening Day
28/06/2021

Duchenne Care Conference 2021 successfully concluded
14/06/2021

Duchenne Ukraine announces international children’s drawing competition
09/06/2021

World Duchenne Awareness Day 2021
07/06/2021

Dr Imelda de Groot Award
03/06/2021

Share4Rare: Setting the path for next generation data sharing in rare diseases
28/05/2021

DMD Care Association Romania joins World Duchenne Organization
13/05/2021

World Duchenne Awareness Day 2021 theme announcement
07/05/2021

Duchenne Family Support Group joins WDO
06/05/2021

Duchenne Care Conference 2021
03/05/2021

Working Group for Newborn Screening in Duchenne
30/04/2021

Summer Training Course for Young Patient Advocates (STYPA)
08/04/2021

Duchenne Australia joins World Duchenne Organization
06/04/2021

España es la primera en abrir un estudio para investigar la DMD / DMB y la salud mental
04/04/2021

Describing medical terms in medicines use
22/03/2021

Caring for people with Duchenne, Becker and other MD's during COVID-19

Autism in Duchenne muscular dystrophy: how to detect and what to do

The experience as mother of a Duchenne adult who recently turned 30