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

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

March 30

March 28

  • The translation of the COVID-19 diary of DMD patient Bert Gooris is now available in English. The original story can be found on the website of Duchenne Parent Project Belgium.
  • The third WDO Webinar on COVID-19 and DMD/BMD is now available on YouTube. Patient organisations explain the current situation in their countries and challenges due to the coronavirus outbreak. Prof. Dr. Jan Verschuuren, LUMC the Netherlands, explains how families, clinicians and hospitals can prepare for potential DMD patients with COVID-19 infection.

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

  • WDO hosted her second webinar addressing frequently asked questions about COVID-19 in relation to Duchenne and Becker muscular dystrophy. This time, Dr. Jarod Wong and Prof. Dr. Annamaria de Luca provide their opinion on the use of steroids, and possible treatments for the Coronavirus for people affected by DMD/BMD.

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