Pompe disease

Support Type
Support Services
  • Cochrane Cystic Fibrosis and Genetic Disorders Review Group

    Cochrane is an international network of healthcare professionals, researchers and consumers producing systematic reviews of evidence. The CFGD group focuses on interventions for treating cystic fibrosis and other genetic disorders (haemoglobinopathies. coagulopathies and inborn errors of metabolism) and has its editorial base in Liverpool, UK. Our reviews all have plain language summaries to help everyone making healthcare decisions. If you are interested in working with us, please contact us.

    Disease Support Organization Last Updated: 18 Mar 2020
  • Foundation for Women & Girls with Blood Disorders

    The Foundation for Women & Girls with Blood Disorders works to ensure all women and girls with blood disorders are correctly diagnosed and optimally managed at every life stage.

    FWGBD:
    Raises awareness and educates key healthcare professionals
    Translates and disseminates information and research
    Nurtures future healthcare leaders
    Fosters collaboration and generates knowledge among core disciplines

    Disease Support Organization Last Updated: 11 Mar 2020
  • Acid Maltase Deficiency Association

    The Acid Maltase Deficiency Association, was formed to assist in funding research and to promote public awareness of Acid Maltase Deficiency, also known as Pompe Disease.

    Disease Support Organization Last Updated: 30 Jan 2019
  • United Pompe Foundation

    The United Pompe Foundation was formed to assist patients and/or their families with medical costs and other expenses that these patients and families face and may not be able to cover, or fully cover, through their insurance.

    Another very important issue we all face is raising the public awareness of Pompe disease. As we are all aware there is very little public awareness of this devastating disease. The committee is comprised of Pompe patients and parents of Pompe patients so that we have a good understanding of the many problems those families must deal with on a daily basis. We hope to be a valuable resource that patients can turn to if they need help. If you have any questions, comments, or would like to help please contact us.

    Disease Support Organization Last Updated: 30 Jan 2019
  • Association for Glycogen Storage Disease

    The purpose of the Association for Glycogen Storage Disease shall be to protect and promote the best interests of all persons and families affected by Glycogen Storage Disease [GSD]; to promote the establishment, improvement, and management of facilities for the treatment, study, education, shelter, recreation, recuperation and other general benefit to GSD-affected persons; to act as a vehicle of communication on GSD-related matters to patients, families, professionals, and the public; and to act as a focus for scientific, educational, and charitable activities related to the disease.

    Disease Support Organization Last Updated: 30 Jan 2019

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