The meeting took place at the AELIP headquarters in Totana where the biopharmaceutical company AMRYT was presented with the next lines of action of the International Association of Relatives and People Affected by Lipodystrophy, included in the 2020 Work Plan, approved during the general assembly of members in June. AMRYT works with innovative treatments to help improve the lives of rare disease patients and orphans
AELIP focuses its efforts on eleven different thematic areas. Its work in social matters and research deserves special attention. The association offers different services to those affected and their families that can cover their needs. Among them we find the Information and Orientation Service in Lipodystrophies (SIOLIP) through which they provide all the information the patient needs to know about these diseases, it is possible to contact other people who suffer from the same pathology, to access the consultation of an expert committee integrated by doctors from different countries of the world and to receive advice about the resources that exist to access them. It also has a psychological support service (SAP), both online and in person, the Legal Support Service (SAJ), which provides advice and guidance to people on any procedure and any type of legal query regarding disability; a sexual advice service (SAS), in which AELIP has a collaboration agreement with the State Association for Sexuality and Disability to attend, educate and provide support for the sexuality of those affected and their family environment, and finally, the Dietary Advice Service (SAD), which is very important because often the only treatment these people can receive to improve their quality of life is a good diet and exercise.
In addition, this year AELIP has launched the first QUALITY OF LIFE STUDY FOR LIPODISTROPHY PATIENTS, also extended to family members in Europe and Latin America to establish what impact psychosocial aspects have on their health and quality of life. It is supported by the Autonomous University of Madrid, the University of Murcia and the University of Almeria.
In terms of research, AELIP collaborates with the FUNDACION INSTITUTO DE INVESTIGACION SANITARIA DE SANTIAGO DE COMPOSTELA. (FIDIS) that together with Dr. David Araujo-Vilar and his research group are developing different studies among them the Molecular diagnosis of patients suspected of suffering from a lipodystrophy of genetic origin. It also has collaboration agreements with the biomedical research centre CIBERER to financially support the research line at the La Paz Hospital in Madrid; with the World Confederation of Barcelona Clubs to carry out an international cooperation project in Peru that includes various social and health actions.
Another objective is to maintain communication with other countries through the International Network area, with the maintenance of the English, German, French and Portuguese versions of the AELIP website, the consolidation of delegations or an expert committee that brings together doctors from different parts of the world.
With events and activities such as the celebration of World Lipodystrophy Day or the social network campaign in the gesture of L, as well as the annual awards gala, they promote awareness and visibility of these diseases. It also maintains an alliance with the main entities of lipodystrophies and rare diseases in the world.
An important part of its work is also the training sessions, as well as the participation in congresses, training webinars in Lipodystrophies and the international symposium.
AELIP works to ensure that communication, both internally and externally, is constant. It maintains a rhythm of publications in the web and social networks of at least two news per week, gathering all of them at the end of the month in a bulletin addressed to the members.
Fundraising for an association is very important. Being the members an important part for this purpose, at the same time, AELIP presents calls for public and private subsidies for the development of these investigations, and contribute to the maintenance of the portfolio of services that the entity provides to any family or person affected by a Lipodystrophy worldwide.
