Alliance

The Greek Alliance for Rare Diseases is a non profitable organization, which aims to extend the knowledge of the common areas of rare diseases, both genetic and non, through information gathering, research and mutual assistance, throughout Greece, and genetic by cooperation within Europe and the rest of the world.
The alliance aims to be a strong institution to illuminate the problems faced by people who suffer from rare diseases as well as problems of their families and carers who support them.

Aims of the alliance

The Greek Alliance Of Rare Diseases was established in 10-07-2003 by a group of distinguished scientists and representatives of existing patients' associations with the support of Eurordis - The European Rare Diseases Association.
The aims of the Greek Alliance of Rare Diseases are:

• To inform both the scientific world and the genetic public of the causes and possible means of preventing these diseases.This will enable people to confront them on a wider front by creating opportunities to develop both new druds ( orphan drugs ) and treatments.
• To improve the quality of life and extend the lifespan of patients by increasing access to reliable information, diagnosis, nursing, psychosocial support.
• To create a data Bank in order to provide scientists and medical practitioners with the detailed information on the current status of each disease as well as progress in related area.
• To support the common hope for successful treatment and / or effective palliative care for all rare diseases through scientific and clinical research and practice.
• To provide, where possible, guidelines for dealing common insurance problems.

Realisation targets

To achieve these aims the Greek Alliance of Rare Diseases:

• Organize scientific demonstrations, symposia,seminars, meetings etc. for the medical world and the general public about ongoing research, as well as prevention and management of rare diseases.
• Use of data bank to exchange information about rare diseases to understand their genetic and other causes, to promote preventative techniques and research.
• Network and cooperate with similar scientific foundations or organizations, which are related to rare diseases and their research.
• Cooperate with government and other international agencies.

To whom appeals to

Greek Alliance of Rare Diseases appeals to:

• Existing patients' associations.
• Patients with diseases so rare that the possibility of locating sufficient members to establish association is non-existent.
• Patients, who do not know where to turn to, and may be unaware of the existence of an association related to their disease.
• Doctors, researchers and scientists, who are interested in the subject as well as patient's relatives and carers.
• Compassionate individuals, who would like to contribute to this effort in any way.

Each rare disease, whether it already has an association or not, has exactly the same needs.For this reason it is absolutely necessary for people who either suffer themselves from rare disease or any member of their close enviroment, to be united under the umbrella of "Greek Alliance of Rare Diseases"    for the benefit of all.

The Greek Alliance Of Rare Disease
Mrs. Marianna Lambrou
Timotheou St 99-101 , 16232 Athens - Greece
Τel.+30210 7660989
Fax.+30210 7660991
E-mail : tsahellas@ath.forthnet.gr

For any financial contribution our bank account is:
ALPHA BANK IBAN:GR 2401401070107002002004039

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