OUR ASSOCIATION

It was founded in May 2015 by an amyloidosis patient support group.

Its main goal is to break the isolation cycle of these patients and contribute to organising this vulnerable group of people with that rare disease, for claiming their rights.

We strive to create a network of copatients and other citizens, all of them volunteers, who are willing to offer their support to those who need it.

To keep people aware of the patients’ daily issues, both at a personal, as well as social, professional and family level and in which way these problems are affecting their quality of life.

The basic operating pillars of our association are to provide psychological, financial and social support to patients, give them accurate information around developments in the health sector and their disease, as well as continued and responsible training and education.

That is why we maintain a very strong bonding with the Institute of Neurology and Genetics as well as various scientific research centres abroad.

The Association further organises a number of awareness campaigns about the disease, as a means of reaching the next line of patients.

The Association is a member of the Rare Diseases Alliance as well as the Cyprus Federation of Patients Associations.

OBJECTIVES
  • The collection of money through lottery tickets or other fundraisers, such as balls, charity markets, concerts and any other events aiming at the financial support of the association and collection of products or objects needed and their safekeeping for the Association’s purposes.
  • The organising of events by various other groups and Associations in order to provide assistance to the patients and their families.
  • Providing effective financial and other support to amyloidosis patients during their stay abroad on their transplant waiting time (and if their treatment continues abroad), as well as the period following their transplant.
  • Organising awareness seminars for patients and members of the Association, in connection with international developments on the disease, involving both diagnosis and treatment.
  • Lobbying for patients problems to various relevant state institutions and/or hospitals, organisations, parliament, government officials and authorities in order to secure the best possible treatment and living conditions for patients and their families.