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Live/ COVID-19: Coronavirus and Duchenne & Becker muscular dystrophy

A regularly updated news feed on the COVID-19 outbreak with relevant information for Duchenne and Becker muscular dystrophy.


March 16

  • A webinar report ‘Duchenne & Vaccines’ is now available in English. Next to this, a scheme is published sharing when and how to adjust a steroid regimen when receiving a COVID vaccination.
    • ONLY the 8-10 days on/off scheme can be adapted to the vaccination
    • DO NOT change daily or alternate day dosing
  • Changes in your steroid regimen should always be discussed with the one prescribing it, which is often a clinician.

February 28

  • During the WDO Member Meeting on February 28, the World Duchenne Organization invited Dr. Erik Niks to present a webinar about Duchenne Muscular Dystrophy in relation to the COVID-19 vaccines. Dr. Niks is a pediatric and adult neurologist in Leiden University medical Center (NL). He discusses questions often received from both families and clinicians, and proposes guidance on getting your vaccination when you’re on medications and steroids.


February 18

January 25

  • Many people have concerns about receiving the COVID-19 vaccine, and whether complications can arise for people who take immunosuppressants. In response, four neuromuscular experts have confirmed that the COVID-19 vaccines are safe, and are encouraging young people over 16 with DMD to take it as soon as possible. Please read the full statement here.

January 15

  • The European Patients Forum created a document ‘Let’s talk about vaccination‘. This guide will be useful to anyone wishing to strengthen their knowledge and confidence in having meaningful conversations about vaccination.

January 12

  • The current approved COVID-19 vaccines, just as any other mRNA vaccines will not impact gene therapy for Duchenne Muscular Dystrophy (DMD). Each vaccine targets a different virus and does not recognize the proteins from virus used for the gene therapy.


December 23

  • The World Muscle Society (WMS) has provided advice for people with neuromuscular disorders, and their healthcare providers since the start of the COVID-19 pandemic. This document available in English and in Spanish aims to answer questions regarding the newly developed vaccines against Coronavirus SARS-CoV2 asked by people with neuromuscular disorders.

July 2

June 26

  • How do you return (or not) to the Standards of Care for someone affected by Duchenne or Becker muscular dystrophy, now that most countries are opening up again? What preventive measures can we take when visiting a hospital, or our schools? Prof. Muntoni, Prof. Goemans, Dr. Wong and Dr. Cripe provide their expert opinion on care for DMD/BMD in times of COVID-19.

May 28

  • The European Parliament Interest Group on Equitable Access to Healthcare and the Patient Access Partnership (PACT) released a joint statement on COVID-19. Full statement can be read here. The Joint Statement was signed by 58 MEPs and was sent to the Commissioner and to Stella Kyriakides.

May 9

May 5

  • The preliminary results of EURORDIS’ Rare Barometer survey shows 9 in 10 people living with a rare disease are experiencing interruption in care because of COVID-19.

April 21

April 16

  • The European Patients Forum shares an Open Memo to health industry representatives outlining the main challenges for patients with chronic diseases and our expectations regarding their on-going commitment and contribution COVID-19 times.

April 8

April 7

  • Audentes shares a community letter expressing the impact of COVID-19 on the progress of preclinical work in Duchenne muscular dystrophy.

April 6

  • Supply of medicines is a critical concern for medicine regulators. EU authorities agree new measures to support availability of medicines used in the COVID-19 pandemic.

April 4

  • The fourth WDO Webinar on COVID-19 and DMD/BMD is now available. In this edition, clinical neuropsychologists Dr. Jos Hendriksen and Dr. Molly Colvin share their knowledge about stress, anxieties and worries, and what you can do to take care of yourself and your children.

April 2

  • A powerful plea by Dr. Jon Hastie from DMD Pathfinders. He speaks up for vulnerable people who get denied critical care in times of COVID-19. “Why are we asking front-line staff to make heart-wrenching decisions on who to save?”

April 1

  • The European Medicines Agency shares an update on treatment and vaccines on COVID-19, including a separate update on chloroquine an hydroxychloroquine.
  • PPMD hosted an interactive webinar focusing on the adult Duchenne population and their unique risks for COVID-19, featuring representation from across their network of Certified Duchenne Care Centers to discuss adult neuromuscular, cardiac, and pulmonary concerns and answer questions.

March 31

March 30

March 28

March 27

  • Today the news reached us that a young Duchenne adult from Belgium has been tested positive with COVID-19. Now that the 29 year old Bert from Leuven, Belgium is back home from the hospital, he shares what he calls his ‘Corona Adventure’.
  • The European Medicines Agency advises continued use of medicines for hypertension such as ACE inhibitors or ARBs, heart or kidney disease during COVID-19 pandemic
  • Catabasis shares their newsletter to reach out and share information to questions about edasalonexent and COVID-19.
  • PTC Therapeutics provides an update regarding availability of Translarna. If patients prescribed Translarna are facing a challenge with maintaining a continuous supply, they should inform their health care professional or patient group and a solution will be found.

March 26

  • The European Reference Network for neuromuscular diseases is trying to understand track the effect COVID-19 is having on the neuromuscular community. To do this they have developed two surveys, one patient survey and a hospital survey.
  • Santhera shares their community letter to DMD patients participating in the SIDEROS and SIDEROS-Extension studies.

March 25

  • European Medicines Agency: Global regulators have published a report today presenting the outcomes of a workshop on COVID-19 vaccine development that was convened under the umbrella of the International Coalition of Medicines Regulatory Authorities (ICMRA).

March 24

March 23

March 22

March 21

March 20

March 19

March 18

  • The U.S. Food and Drug Administration today issued a guidance for industry, investigators and institutional review boards conducting clinical trials during the coronavirus (COVID-19) pandemic.
  • TAMDMD shares in their newsletter they recommended to reduce travelling and trial center visits.

March 17

  • Clinical trials might be affected due to the Coronavirus outbreak. At the moment we don’t have detailed information. Which measurements will be taken, can change per trial.

March 16

March 15

  • Various patient organisations are hosting webinars to address concerns about the COVID-19 outbreak. Please visit your local patient organisation’s media channels or contact them directly for more information.

March 14

  • WDO hosted a webinar for her members on COVID-19 and Duchenne/Becker muscular dystrophy. See the full webinar below.

March 13

March 11