The meeting was held online through the ZOOM platform.
AELIP has presented to the biopharmaceutical company AMRYT the next lines of action of the International Association of Relatives and Sufferers of Lipodystrophies, included in the Work Plan 2021.
AMRYT works with innovative treatments to help improve the lives of patients with rare and orphan diseases.
AELIP focuses its efforts on eleven different thematic areas. Special attention should be given to its social and research work. The association offers different services to those affected and their families to meet their needs. Among them we find the Service of information and orientation in lipodystrophies (SIOLIP) through which they provide all the information that the patient needs to know about these diseases, it is possible to contact other people who suffer from the same pathology, access to the consultation of a committee of experts composed of doctors from different countries of the world and receive advice on the resources that exist to access them. It also has a psychological support service (SAP), both online and in person, and a legal support service (SAJ), which advises and guides people in any kind of legal procedure or consultation regarding disability; A sexual counselling service (SAS), in which AELIP maintains a collaboration agreement with the State Association Sexuality and Disability to attend, educate and provide support for the sexuality of those affected and their family environment, and finally, the Dietary Counselling Service (SAD), which is very important as often the only treatment that these people can receive to improve their quality of life is to eat a good diet and exercise.
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 develop different studies including the molecular diagnosis of patients with suspicion of suffering a lipodystrophy of genetic origin. It also has collaboration agreements with the biomedical research centre CIBERER to financially support the research line of the La Paz hospital in Madrid; with the World confederation of Barcelona supporters clubs of the world to carry out an international cooperation project in Peru that includes various socio-health actions.
Another of the objectives 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 a committee of experts that brings together doctors from different parts of the world.
With events and activities such as the celebration of the World Lipodystrophy Day or the campaign on social networks in the L gesture, as well as the annual awards gala, they promote awareness and visibility of these diseases. It also maintains alliances with the world's leading lipodystrophy and rare disease organisations.
An important part of AELIP's work also includes training sessions, as well as participation in congresses, training webinars on lipodystrophies and the international symposium.
AELIP works to ensure that communication, both internally and externally, is constant. It maintains a rhythm of publications on the website and social networks of at least two news items per week, gathering all of them at the end of the month in a newsletter aimed at members.
Fundraising for an association is very important. Being the members an important part for this purpose, in parallel, AELIP presents calls for public and private grants 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.
