"95, Rare Alliance Greece" is a Greek non-profit Organization advocating for all who live with a rare and an undiagnosed rare disease. It was founded in Athens in 2019, and today covers more than 47 rare diseases with members from all over Greece, with the number constantly increasing.
The Organization's main objective is to address everyday problems faced by patients with rare and undiagnosed rare conditions in Greece, but also to build a future for our national rare disease community. Therefore, not only does it support capacity building, Education and Patient Advocacy, but it also promotes research in the field of rare disorders and ensures the transfer of knowledge, innovation and learning from abroad.
The Board and the founding members are all rare patients or carers and people with high integrity, trained by the European Academy of Patients (EUPATI) and the Academy of Patients of the European Organization for Rare Diseases (EURORDIS), with extensive experience in patient advocacy, education, RD medicines development and asserting patients' rights at both national and European levels.
The number "95" was chosen as the distinctive title of the Organization in order to symbolize the percentage of rare diseases that don’t have an approved treatment, while the name "Greek Alliance’’ highlights the need for cooperation in order to improve the quality of life of people with rare diseases.
Company Details
- Employees
- 5
- Founded
- -
- Address
- Καπνικαρέας 19α, Athens,10 556,greece
- Industry
- Wellness And Fitness Services
- NAICS
-
Fitness and Recreational Sports Centers
- Website
- http://rarealliance.gr
- Keywords
- rare diseases and advocacy.
- HQ
- Athens
- Competitors
- ESN AUA Athens, ΕΣΠΑ - Δίκαιη Αναπτυξιακή Μετάβαση 2021-2027, Institut de Génétique Humaine (UMR 9002 CNRS - Univ. Montpellier), Cancer Prevention Research Group in Greece (CPRGGreece), ThinkYoung, German Medical Institute, International Federation of Crohn's and Ulcerative Colitis Associations, Centre for Microbial Interactions, Society of Junior Doctors, Surgical Society NKUA.
95, Rare Alliance Greece Questions
95, Rare Alliance Greece's website is http://rarealliance.gr
95, Rare Alliance Greece's LinkedIn profile is https://gr.linkedin.com/company/95-rare-alliance-greece
95, Rare Alliance Greece has
5 employees.
View email and phone details for 5
employees at 95, Rare Alliance Greece.
95, Rare Alliance Greece's industry is
Wellness and Fitness Services
95, Rare Alliance Greece's top competitors are
Esn Aua Athens,
Εσπα - Δίκαιη Αναπτυξιακή Μετάβαση 2021-2027,
Institut De Génétique Humaine (Umr 9002 Cnrs - Univ. Montpellier),
Cancer Prevention Research Group In Greece (Cprggreece),
Thinkyoung,
German Medical Institute,
International Federation Of Crohn's And Ulcerative Colitis Associations,
Centre For Microbial Interactions,
Society Of Junior Doctors,
Surgical Society Nkua.
95, Rare Alliance Greece's categories are Wellness and Fitness Services
95, Rare Alliance Greece's founding year is 2019
