The International Association of Families and People Affected by Lipodystrophies AELIP, organised the II VIRTUAL MEETING OF FAMILIES AND PEOPLE AFFECTED BY LIPODYSTROPHIES on Wednesday 20th October at 18:00h *Spanish time*.
The meeting was part of the activities planned for the IX INTERNATIONAL SYMPOSIUM OF LIPODISTROPHIES and was held ONLINE through the ZOOM platform with an estimated duration of 2 hours.
This initiative was born in 2020 with the objectives of being a meeting point and exchange of experiences between families and people affected by Lipodystrophies from all over the world as well as to transfer the reality of the day to day life of people suffering from Lipodystrophy and their families.
The meeting was moderated by José Jerez Ruiz, Social Worker of AELIP, who gave the floor to all the participating families from Spain, France, Argentina, Peru, Portugal and Brazil.
This virtual meeting point served for those affected to meet other families and people affected in the world virtually, to remember the portfolio of services that AELIP implements as well as to inform the families of the status of metreleptin (the only authorised treatment for lipodystrophies and which currently has an express resolution of non-funding by the Spanish national health system) and the actions that the entity is taking to be included in the pharmaceutical provision of the SNS.
The president Naca Eulalia Pérez de Tudela Cánovas wanted to highlight the importance of organising these meetings as they allow us to get closer to the reality of other families in the world and share with them the experiences and personal experiences.
The results of this second meeting were very positive and all the participants agreed to hold a third edition.
