News Archive • World Duchenne

Showing all 30 results

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…

Sarepta Announces Clinical Results from MOMENTUM study
07/12/2020

Today, Sarepta shared an update for its investigational PPMO SRP-5051 clinical trial study. MOMENTUM, the name of their phase 2…

Genethon gets approval to start gene therapy trial
04/12/2020

Genethon is dedicated to design and develop a gene therapy products for rare diseases. On Monday 30th of November it…

The experience as mother of a Duchenne adult who recently turned 30
19/11/2020

Elizabeth Vroom shares her experience as mother of a Duchenne young man who recently celebrated his 30th birthday. Elizabeth Vroom…

International congress on the effects of COVID-19 on people with rare diseases
05/11/2020

On the second week of November, an international conference will take place virtually in order to present the patient registry…

Enlace Mexico: WDO’s 45th Member Organization
03/11/2020

Enlace Distrofia Muscular Duchenne Becker is the only non-profit organization providing optimal medical, emotional and psychological care for DMD/BMD patients…

Report: World Muscle Society (WMS) 2020 International Congress
27/10/2020

This year the 25th edition of the World Muscle Society (WMS) 2020 International Congress, a congress where the worldwide important…

WDO welcomes 44th member patient organization: DMD Aileleri
27/10/2020

DMD Aileleri Derneği (meaning DMD Families Association in Turkish) started Turkey by families whose children are diagnosed with Duchenne and…

Phase 3 PolarisDMD trial with edasalonexent stopped
27/10/2020

Our hearts are heavy when the news reached us that the Phase 3 PolarisDMD trial with edasalonexent did not meet…

FDA Orphan Drug Designation for ATL1102 for DMD
26/10/2020

Antisense Therapeutics announced that the US Food and Drug Administration (FDA) Office of Orphan Products Development has granted an Orphan…

Duchenne Patient Academy 2020: Applications now open
26/10/2020

We are delighted to announce that Duchenne Patient Academy, supported by the World Duchenne Organization, is returning for the fourth…

Attention to mental well-being in DMD/BMD families
10/10/2020

Living with Duchenne and Becker muscular dystrophy (DMD and BMD) has a profound impact on the lives and mental health…

Santhera stops Phase 3 SIDEROS Study and Development of Puldysa®
06/10/2020

Today, Santhera announced the discontinuation of its Phase 3 SIDEROS study with Puldysa® (idebenone) in patients with Duchenne muscular dystrophy…

New Russian patient organization 'CF Gordey' joins WDO
22/09/2020

CF Gordey is a family created patient advocacy organization who is working with families, healthcare, society and the state to…

Duchenne and the brain: What is known from animal models?
07/09/2020

We all know that in Duchenne and Becker muscular dystrophy, the muscles are affected. However, there are also dystrophin variants…

Duchenne and the Brain
07/09/2020

An online program about brain involvement in Duchenne and Becker muscular dystrophy will launch on World Duchenne Awareness Day. This…

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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

Sarepta Announces Clinical Results from MOMENTUM study
07/12/2020

Genethon gets approval to start gene therapy trial
04/12/2020

The experience as mother of a Duchenne adult who recently turned 30
19/11/2020

International congress on the effects of COVID-19 on people with rare diseases
05/11/2020

Enlace Mexico: WDO’s 45th Member Organization
03/11/2020

Report: World Muscle Society (WMS) 2020 International Congress
27/10/2020

WDO welcomes 44th member patient organization: DMD Aileleri
27/10/2020

Phase 3 PolarisDMD trial with edasalonexent stopped
27/10/2020

FDA Orphan Drug Designation for ATL1102 for DMD
26/10/2020

Duchenne Patient Academy 2020: Applications now open
26/10/2020

Attention to mental well-being in DMD/BMD families
10/10/2020

Santhera stops Phase 3 SIDEROS Study and Development of Puldysa®
06/10/2020

New Russian patient organization 'CF Gordey' joins WDO
22/09/2020

Duchenne and the brain: What is known from animal models?
07/09/2020

Duchenne and the Brain
07/09/2020

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