PANCYPRIAN ASSOCIATION OF RARE GENETIC DISEASES UNIQUE SMILES
General Information
Identification Code: 826053491709-38
Website: https://www.monadikaxamogela.org/
Entity Form: NON PROFIT
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 4/23/2024
Mission & Interests
Goals: We are a group of people with rare diseases, parents, friends and health professionals who all shared from our own point of view, our strong concerns about the huge needs that people with rare diseases have to face.
Needs such as an early diagnosis, expertise, global approach by a group of health professionals, support and information.
Our ultimate goal is to boost the health centers that already exist in our country in order to create a center of excellence for rare diseases. We would save mental and financial costs if the patients or the parents arrived from a compatible path to the specialized groups for a n early diagnosis and proper treatment! Many patients and especially parents go from doctor to doctor until they end up to someone who knows or can recommend a specialist.
There should be created policies that recognize the special need for facing rare diseases.
We are a non-profit association with official action since February 21, 2014 under the registration numb
Interests Represented: Does not represent commercial interests
Interests:
- Digital economy and society
- Education and training
- Justice and fundamental rights
- Public health
- Regional policy
- Research and innovation
- Youth
Levels of Interest:
- national
Activities
Main EU Legislative Proposals: 1. Implementation of the Cross-border Healthcare Directive and European Reference Networks
- European Pillar of Social Rights and its Action Plan
- EU Disability Strategy
- The EU4Health Programme in general, with specific focus on issues relevant to the EU strategy on Rare Diseases.
- The EU Research Programme 2021-2027: “Horizon Europe” in general, with particular focus on projects and EU collaboration relevant to the Rare Diseases field.
Communication Activities: All areas for implementation of the above-mentioned initiatives, policies and legislation represent areas of interest for UNIQUE SMILES and its members. UNIQUE SMILES is called to act upon all these relevant files together with other national stakeholders involved in the rare diseases fields.
Inter-institutional or Unofficial Groupings: N/A
Head Office
Address: CHALKANOROS 7
Post Code: 2540
City: NICOSIA
Country: CYPRUS
Phone:
Indic Phone: 357
Phone Number: 99219079
EU Office
Address: CHALKANOROS 7
Post Code: 2540
City: NICOSIA
Country: CYPRUS
Phone:
Indic Phone: 357
Phone Number: 99219079
Financial Data
Closed Year:
Start Date:
End Date:
Funding Sources:
- Donations
- Public funding
Other Source Info: Public funding - from the Cyprus Ministry of Health the amount of EUR60.000
Contributions:
Total Budget: 200000
Grants:
Current Year:
Grants:
Membership Information
Members: 1
Members F T E: 1
Info Members: UNIQUE SMILES is operating a Multidisciplinary Center - https://www.monadikacenter.com.cy.
Structure
Structure Type: Structure
Is Member Of: https://www.monadikaxamogela.org/our-sponsors/
Organisation Members: EURORDIS
EPF
IIF
WORLD PATIENTS ALLIANCE
Current Job Opportunities
Lead at PANCYPRIAN ASSOCIATION OF RARE GENETIC DISEASES UNIQUE SMILES
PANCYPRIAN ASSOCIATION OF RARE GENETIC DISEASES UNIQUE SMILES
mid-levelBrussels, BelgiumFull-time-time
Posted: 9/23/2025
mid-levelBrussels, Francefull-time
Posted: 8/21/2025