The International Association of Relatives and Affected Lipodystrophy, AELIP, held a working meeting with representatives of international associations working in the field of rare lipodystrophies.
The objective of the meeting was to get to know the work that is being developed at an international level, as well as to coordinate future collaborative actions in view of the celebration of the next world day of lipodystrophies that will be held on March 31st.
The president Naca Eulalia Perez de Tudela, the director Juan Carrión Tudela and the social worker Jose Jerez Ruiz, made known the work plan that AELIP is developing during this year 2019 to the rest of associations, highlighting the great efforts that the entity is doing to support and promote the research that this year has received a total of 66,000€ for the two lines that are developed in Spain both the Hospital Complex of Santiago de Compostela and the University Hospital of "La Paz" in Madrid.
In addition AELIP, took advantage of this meeting to launch its proposed international networking project called International Network in Lipodystrophies (INLIP) whose main objectives are:
Promote networking and the improvement of institutional coordination through the facilitation of mechanisms and protocols for action and exchange of information between the various administrations and entities involved.
Create a coordination network between associations and entities that work 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 implementation and development of specific programs, or other specific actions.
Defend the rights of people who suffer from lipodystrophy.
Carry out awareness and visibility activities, adhering to and replicating the framed and commemorative actions of World Lipodistrophy Day 31M.
AELIP proposed a joint review with the rest of the associations of this proposal of international scope and were located before the end of the year to evaluate this proposal.
