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Support Type
Support Services
  • Bobby Jones Chiari & Syringomyelia Foundation

    Our mission is to advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related disorders.

    Disease Support Organization Last Updated: 3 Mar 2022
  • PVNH Support & Awareness

    PVNH Support Awareness connects families together, advocates and educates patients, family members and medical professionals about Periventricular Nodular Heterotopia and other forms of neuronal heterotopia disorders. Our goal is to positively impact the outcome of affected patients’ lives.

    Disease Support Organization Last Updated: 1 Mar 2022
  • Scleroderma & Raynaud’s UK

    Our mission is to improve the lives of everyone affected by Scleroderma and Raynaud’s. We do this by investing in research, improving awareness and understanding of the conditions and providing information and support to all those affected.

    Disease Support Organization Last Updated: 28 Feb 2022
  • Coalition to Cure Calpain 3

    Coalition to Cure Calpain 3 is committed to treating and ultimately curing limb girdle muscular dystrophy type 2A (LGMD2A/R1, a form of calpainopathy). Our mission is to fund high potential research and clinical trials as we educate the global community about this muscle-wasting disease.

    Disease Support Organization Last Updated: 26 Feb 2022
  • The Oxalosis & Hyperoxaluria Foundation

    The Oxalosis Hyperoxaluria Foundation (OHF) is dedicated to finding treatments and a cure for all forms of hyperoxaluria.

    Disease Support Organization Last Updated: 25 Feb 2022

Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.

Reference: Access aggregated data from Orphanet at Orphadata.

Orphadata: Free access data from Orphanet. © INSERM 1999. Available on Data version June 2022.

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