There is 1 member for the country Greece:
Πανελλήνιος Σύλλογος Ασθενών & Φίλων Πασχόντων από λυσοσωμικά νοσήματα
Πανελλήνιος Σύλλογος Ασθενών & Φίλων Πασχόντων από λυσοσωμικά νοσήματα "Η Αλληλεγγύη
12 Polyla street- Gerakas - Athens Πολυλά 12 - Γέρακας Αττικης
Email: firstname.lastname@example.org &
The panhellenic Association of patient & Friends suffering from lysosomal diseases "The Solidarity"
The patient association is a non profitable organization, which aims to extend the knowledge of the common areas of lysosomal diseases, information gathering, therapeutic approach and prevention etc. The association aims to illuminate the problems faced by people who suffer from lysosomal diseases as well as problems of their families and carers who support them.
Aims of the association
- To inform the public and the scientific world and the genetic public of the causes and possible means of preventing these diseases.
- To improve the quality of life and extend the lifespan of patients by increasing access to reliable information, diagnosis, psychosocial support, genetic counseling etc.
- To provide, where possible, guidelines for dealing common insurance problems, to promote the development of the scientific research for lysosomal diseases etc.
- To support the common hope for successful treatment and / or effective palliative care for all lysosomal diseases through scientific and clinical research and practice.
- To provide, where possible, guidelines for dealing common insurance problems.
- To participate and collaborate with scientific organizations, or other patient associations and any relevant party relevant to lysosomal diseases Greek or International for the continuous information of its members regarding the scientific research for these diseases and treatments etc.
In 16 years of operation, the patient association "Solidarity" has achieved:
- free medication to all patients with lysosomal diseases, with full coverage from the insurance funds.
- It has recognized and granted disability rates and molecules for students introduction in higher education. The goal is to integrate all lysosomal diseases (Gaucher is already included) in the new Regulation disability to recognize patients' rights and access to treatment and social benefits.
- To avoid the waiting time of patients with respect to their disability rates approval from the specific committee which affects the quality of life and disability benefit rate.
- One of the highlights was the "decentralization" of treatment centers, resulting in the patient not longer forced to travel 2 times a month at a hospital in Athens or Thessaloniki to receive his/her treatment.