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The International Association of Relatives and Affected of Lipodystrophies, AELIP, held a working meeting with representatives of international associations working in the field of infrequent lipodystrophies.
Its objective was to know the work that is being developed internationally, as well as to coordinate future collaborative actions for the celebration of the next world day of lipodystrophies to be held on March 31.
The president Naca Eulalia Perez de Tudela, the director Juan Carrión Tudela and the social worker Jose Jerez Ruiz, announced the work plan that AELIP is developing during this year 2019 to the rest of associations, highlighting the great efforts that the entity is making to support and promote the research that this year has received a total of € 66,000 for the two lines that are being developed in Spain both in the Santiago de Compostela Hospital Complex and in the "La Paz" university hospital in Madrid.
In addition to AELIP, I take this meeting to launch its proposed International Networking Project called International Network in Lipodystrophies (INLIP) whose main objectives are:
Encourage networking and the improvement of socio-sanitary institutional coordination through the facilitation of mechanisms and protocols for action and exchange of information between the different administrations and entities involved.
Create a network of coordination between associations, entities, working with lipodystrophies to exchange information and good practices worldwide
Establish an online coordination network between associations, entities that work with lipodystrophies to exchange information about them.
Carry out coordination actions with all the parties involved: patients, public administration, health professionals, etc., to search for resources and improve the care of those affected worldwide.
Detect and know the real needs of the group to respond to them from the start-up and development of specific programs, or other specific actions.
Defend the rights of people suffering from lipodystrophy
Carry out awareness and visibility activities, Adhering to and replicating the framed and commemorative actions of World Lipodystrophy Day 31M.
AELIP proposed to review this proposal of an international scope together with the rest of the associations and they were placed before the end of the year to assess this proposal.
Source: AELIP
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