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  • What is a patient registry?
  • Who should register?
  • Why should I register?
  • What information is collected?
  • How do I register?
  • Registration process
  • Data protection
  • Example questionnaire
  • Frequently asked questions
  • General information
  • Frequently asked questions
  • Information for researchers
  • Patients’ stories
  • Current research
  • Patient Support Organisations
  • Clinical trials
  • Research
  • Care information
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  • The Steering Committee
  • The Registry team
  • Newsletters
  • Leaflets
  • Posters
  • Publications
  • Projects supported
  • Register now
  • Login
  • JWMDRC Registries
  • Legal notice
  • Home
  • What is a patient registry?
  • Who should register?
  • Why should I register?
  • What information is collected?
  • How do I register?
  • Registration process
  • Data protection
  • Example questionnaire
  • Frequently asked questions
  • General information
  • Frequently asked questions
  • Information for researchers
  • Patients’ stories
  • Current research
  • Patient Support Organisations
  • Clinical trials
  • Research
  • Care information
  • Contact us
  • The Steering Committee
  • The Registry team
  • Newsletters
  • Leaflets
  • Posters
  • Publications
  • Projects supported
  • Register now
  • Login
  • JWMDRC Registries
  • Legal notice
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Newsletters Graphic Animation

You will be provided with regular updates from the Registry in the form of a newsletter, which will be sent to you annually by e-mail. Previous versions can be found here:

October 2018

  • English

June 2016

  • English

  • French

  • German

November 2014

  • English

  • French

  • German

July 2014

  • English

  • French

  • German

December 2013

  • English

  • French

  • German

April 2013

  • English

  • French

  • German

April 2012

  • English

  • French

  • German