OUR ASSOCIATION

It was founded in May 2015 by a number of people supporting patients suffering from amyloidosis, as an effort to organise this small and vulnerable group with the aim of securing their rights. This was and shall remain the Association’s main objective.

In parallel, we strive to inform patients about new developments that concern possible treatments and their effectiveness, by maintaining direct contact with the Institute of Neurology and Genetics, but also various other specialized neurological centres abroad.

On a similar vein and thinking forward, we have organised various awareness campaigns having in mind that people who have yet to be diagnosed or have just been informed, are going to need a great deal of support in the near future.

The Association is an active member of the Rare Illnesses Alliance as well as the Cyprus Federation of Patients and Friends Associations.

AIMS:

  1. Donations through the issuing of lotteries, charity balls, markets, concerts and any other events. The purpose is not just to collect money, but also acquire other objects or products that will be deposited or put under the care of an account or trust fund that will be created to fulfill the Association’s goals.
  2. Organising social gatherings that will contribute towards building the best possible friendships and relations between the patients, their families and friends who are members of the Association
  3. Informing patients and their families about various sources of state aid, as well as financial assistance from other lawful state and/or EU, private or charity organisations and Associations.
  4. Providing effective financial, psychological and practical support, as well as any other assistance that can lead to the best possible welfare and life for FAP patients. This support is for particular importance for them during their stay abroad, waiting for a transplant (as long as the treatment is not possible in Cyprus and it’s necessary to travel and live abroad), as well as following their transplant.
  5. Organising awareness and info-seminars for patients and other members of our Association on international developments concerning ways of FAP diagnosis and treatment.
  6. Pushing forward members’ everyday issues and problems to the various relevant state bodies and authorities. These might include the government, parliament, hospitals or various public or private organisations and institutions. The goal is to secure the best possible treatment, care and living conditions and welfare for patients and their families.