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No surprise you've never heard about Charcot-Marie-Tooth so far, it is a rare disease that affects 1 out of 2500 persons around the globe, heavily impacting our lives as it significantly reduces our ability to move legs and hands.
We experience weakness in your legs, ankles, feet, and hands, loss of muscles in our legs and feet, high foot arches, curled toes (hammertoes), decreased ability to run and walk on uneven surfaces, difficulty lifting our foot (footdrop), awkward or higher than normal step (gait). As a joke, for the way we walk we call us "Penguins".
The mission of our patients-run association is to support people affected by this rare condition.
ACMT-Rete main aims are:
- Stimulate research in order to increase the skills and knowledge related to the treatment of CMT disease and similar syndromes;
- Encourage the creation of centers of excellence for the diagnosis and treatment, which can work in partnership with one another;
- Promote the meeting and confrontation among people affected by Charcot-Marie-Tooth disease and their families through the media and moments of socialization;
- Be a point of information concerning trusted medical centers and professionals, legal aspects regarding disabled people;
- Cooperate with other associations in order to improve the patients’ quality of life.
- Promote research and training of specialized professionals in collaboration with physicians, institutions, associations, and organizations;
- Encourage the creation of a network of physicians, researchers and other professionals orbiting around peripheral neuropathies;
- Listen to the patients’ needs and their families’ and give them information;
- Provide support and up-to-date information through our portal, www.acmt-rete.it;
- Raise funds to finance research and the other activities of the association.
ACMT-Rete is one of the founding members of the European CMT Federation (www.ecmtf.org), which includes France, UK, the Netherlands, and Belgium PAOs.
About This Cause
ACMT-Rete is an Italian patient-centric national non-profit Organization, supporting Charcot-Marie-Tooth patients and their families.
Since 2001, thanks to high-level professionals offering their support and collaboration and to our association, awareness on CMT has progressively grown and many ambitious research projects and treatment protocols are spreading, making us look at the future with a positive attitude.
On behalf of Charcot-Marie-Tooth patients, we thank you from the bottom of our hearts for your kind help