Online meetings and counseling for patients with lysosomal diseases

Hosted by Asociatia Lumea lui Alexandru /Alexandru's World Association(EN)

22 March 2021 to 22 March 2022
Online, Online-Targu-Mures, Romania


The project “Online meetings and counseling for patients with lysosomal diseases”, refers to organizing, for 1 year (March 2021-March 2022), of a series of online events, webinars, in the form of a support group, consisting of families, children and young people of the community of rare diseases, more specifically lysosomal diseases ( Mucopolysaccharidosis type I and II and Alpha Mannosidosis), as well as specialists invited to online activities, who through their expertise to offer us: advice, counseling, guidance, etc.
The online activities of the project have so far been 28 webinars and have been carried out through the Zoom application, as follows:
-21 meetings with the physiotherapist during which the aim was to create a series of webinars in the form of a “Weekly program for learning basic routines dedicated to children with disabilities”, which parents can implement at home. In connection with these activities, 40 demonstration videos were made and presented during the online meetings, by the physiotherapy specialist. These filmed materials were also uploaded on the website of Alexandru’s World Association, on the ONLINE KINETOTHERAPY page, based on authentication, for all participants, so that they could be watched and practiced at home. During the physiotherapy sessions, the videos made by the parents are visualized, containing the exercises done at home. These exercises, under the guidance of the physiotherapist, are also performed live during the ZOOM session.
-4 meetings with the psychologist, suggestively called “Workshops for the soul”;
-1 meeting with the pediatric geneticist;
-1 meeting with the pediatrician specialized in providing first aid;
-1 communication with the pedodontics dentist;
-1 meeting with a biochemist researcher;
The project aims to improve the quality of life of children, young people and families of those affected by Mucopolysaccharidosis type I and II and Alpha Mannosidosis, by informing, counseling and learning basic skills in areas such as physical therapy, psychological counseling, genetic counseling, first aid, dental advice, understanding of bio-chemical processes, all designed to help them manage these diseases as easily as possible.