Aelip claims promoting research

And the lipodystrophy are a social and health priority on the occasion of the world day of these pathologies

Make visible the reality of lipodystrophy is one of the objectives of the Spanish Association of Families and Affected Lipodystrophies (AELIP).

Today has managed to get his message highest listen if possible, thanks to the collaboration of the Acrobatic Patrol Parachuting Air Force (PAPE) base Sewell, who has offered an exhibition at the fairgrounds in Totana under of the commemoration of the World Day is celebrated today lipodystrophies.

Five paratroopers have made an acrobatic jump from 5,000 feet flopping on the fairgrounds in Totana, under the watchful eye of the attendees, including hundreds of children from eight schools in this municipality and Occupational Center "José Moya Trilla "and Mental disease Center" Princess Letizia ".

The paratroopers have carried the flag AELIP, who later handed over to the president of the association, Naca Eulalia Perez de Tudela.

AELIP president stressed the importance of this World Day which has been celebrated with various activities since January and have been replicated in more than 25 countries.

Naca Eulalia Perez de Tudela thanked the disposal of the Air Force to collaborate with this exhibition on this day, and has highlighted the special significance it has had, since the logo of this association includes wings representing people who have experienced lipodystrophy as well as the promotion made to improve the quality of life of those affected.

For his part, Mayor of Totana, Juan José Canovas, has expressed support Consistory claims and objectives of AELIP and noted that the city is proud to have a partnership like this and with all people and volunteers integrate it.

The Minister of Family and Equal Opportunities, Violante Thomas, said the regional government's commitment to rare diseases and has expressed pride means that a national association as AELIP with also international projection is murciana and also be totanero the president of the Spanish Federation for Rare Diseases (FEDER), Juan Carrion, also present at the event.

Thomas stressed that since the regional government will continue to support because it is essential that people with such diseases can live in a better quality of life and noted that rare diseases are of the whole society and we must all be united .

The event was also attended by the head of PAPEA launch, the brigade Alberto Moreira Vidal;

Captain José Hernández Pedrero, accidental head Squadron 13th Air Surveillance;

totanera councilors of the municipal corporation and members of the board of AELIP.

Subsequently, we proceeded to read the manifesto of the World Day Lipodystrophies by teachers in schools assistants who accompanied by students of the "La Milagrosa" in the town have come to a balloon release.

Among other claims it has requested the creation of reference units worldwide in comprehensive care to patients with lipodystrophy 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.

See report:

Source: AELIP


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