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Why should I register?

There are many advantages to joining a registry that is relevant to your condition. The Global FKRP Registry aims to:  

  • facilitate patient recruitment for clinical trials – registered patients may be able to participate in trials more easily;
  • accelerate research into new therapies for FKRP-related conditions;
  • keep registered patients informed about research results, such as new treatments for FKRP-related conditions;
  • help specialists gain more knowledge about the prevalence, the epidemiology and the natural history of  FKRP-related conditions;
  • help achieve equal care for all patients with FKRP-related conditions worldwide;
  • help raise the urgently needed funds for further research.