News Archive • World Duchenne

Showing all 30 results

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.

WDO Webinar 6: Duchenne & Vaccines
16/03/2021

During the WDO Member Meeting on February 28, the World Duchenne Organization invited Dr. Erik Niks to present a webinar…

Ignite DMD: Data and clinical trial update
16/03/2021

Solid Biosciences announced that they have resumed safe dosing at the 2E14 vg/kg dose, and that this patient experienced mild…

Open Access: Recent studies on Duchenne muscular dystrophy
15/03/2021

Recent studies on Duchenne muscular dystrophy (DMD) have greatly deepened our understanding of the primary and secondary pathogenetic mechanisms. Guidelines…

Returning Individual Clinical Trial Data Back To Participants
10/03/2021

VISION-DMD today released a white paper on returning meaningful individual clinical trial results. The focus of the white paper ‘Returning…

Democratizing access to information and care for Duchenne MD
01/03/2021

WDO receives a grant to empower patients and parents in developing countries affected by Duchenne Muscular Dystrophy

FDA approves Sarepta's AMONDYS 45 (casimersen)
26/02/2021

Today, Sarepta Therapeutics announced that the U.S. Food and Drug Administration (FDA) has approved AMONDYS 45 (casimersen). AMONDYS 45 is…

Duchenne Emergency and Capacity Building Program
15/02/2021

Duchenne Data Foundation and the World Duchenne Organization start the Duchenne Emergency and Capacity Building Program Amsterdam, 15 February –…

Meeting on Data Sharing for Duchenne
22/01/2021

Step by Step towards Duchenne FAIR data In 2019, we made a commitment towards making Duchenne data suitable for sharing…

Will the COVID-19 vaccine impact my possibility to have gene therapy?
12/01/2021

Gene therapy uses viruses to deliver a micro-dystrophin gene or an exon skipping gene. COVID-19 is a virus. If I…

Lay summaries of SPITFIRE and THUNDERJET studies available
11/01/2021

All results of clinical trials generate new knowledge, and helps to advance the development of treatments. This includes the sharing…

Translarna (ataluren) approved in Russia
08/12/2020

PTC Therapeutics today announced that Translarna™ (ataluren) has been granted marketing approval in the Russian Federation for nonsense mutation Duchenne…

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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

WDO Webinar 6: Duchenne & Vaccines
16/03/2021

Ignite DMD: Data and clinical trial update
16/03/2021

Open Access: Recent studies on Duchenne muscular dystrophy
15/03/2021

Returning Individual Clinical Trial Data Back To Participants
10/03/2021

Democratizing access to information and care for Duchenne MD
01/03/2021

FDA approves Sarepta's AMONDYS 45 (casimersen)
26/02/2021

Duchenne Emergency and Capacity Building Program
15/02/2021

Meeting on Data Sharing for Duchenne
22/01/2021

Will the COVID-19 vaccine impact my possibility to have gene therapy?
12/01/2021

Lay summaries of SPITFIRE and THUNDERJET studies available
11/01/2021

Translarna (ataluren) approved in Russia
08/12/2020

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