Registers and biobanks

Have you and/or a family member received genetic confirmation of your Limb Girdle Muscular Dystrophy (LGMD) sub-type?  If so, please be sure to have your name and information entered in the PATIENT REGISTRY for that diagnosis.

When you register, you may have access to the following services, depending on the registry:

  • General information about your disease
  • Help to find appropriate experts (both scientific and clinical) in your country or area
  • Information about ongoing or upcoming clinical trials relevant to your disease
  • A source of knowledge about clinical trials and treatment options that are under development

PATIENT REGISTER OF THE GFB

Sign up for the GFB Register    

OTHER INTERNATIONAL PATIENT REGISTERS

Other registries for Limb Girdle Muscular Dystrophies at the link: Go to Site

Orphanet

You can also consult the ORPHANET portal in the BIOBANKS section: Go to Site

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