Portal de Totana
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Parachute Acrobatic Patrol Air Force (PAPE) will offer an exhibition of skydiving morning March 31 in Totana occasion of World Day Lipodystrophies.
This will be one of the activities organized by the Association of Families and Affected Lipodystrophies (AELIP) to mark the World Day of these conditions and will take place at the fairgrounds in Totana.
Also in the same venue will be the reading of the Manifesto of the World Day of lipodystrophy, which will feature students from the school "La Milagrosa" of Totana and which highlight the needs of this group and are encouraged to promote action and aims to cover them.
Thus, among other issues, the manifesto "Investigating lipodystrophy" creating reference units worldwide in comprehensive care to patients with lipodystrophy requested and that these pathologies are considered as social and health priority by the various public and private institutions .
Also, the establishment of a map of experts / professionals in lipodystrophy worldwide and dissemination of lipodystrophy-Connect, the first global registry of patients with rare lipodystrophy syndromes are asked, through various institutions and health authorities (Ministries of Health European Commission), scientific societies of Pediatric Endocrinology and Diabetes, Genetics and Internal Medicine, media, social networks, EURORDIS, NORD, CORD, etc,
Other requests include the establishment of specific measures to ensure equitable access to vital medicines use for families with lipodystrophy, in particular human recombinant leptin;
boosting research in lipodystrophy through the centers, services and reference units;
or institutional support for the European Consortium of Lipodystrophies, European network of clinical and basic groups working in the field of lipodystrophy.
Source: AELIP
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