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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.

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