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PANCYPRIAN ASSOCIATION OF RARE GENETIC DISEASES UNIQUE SMILES

General Information

Identification Code: 826053491709-38
Website: [object Object]
Entity Form: NON PROFIT
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 4/23/2024
EP Accredited Number: 0

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: [object Object]

EU Office

Address: CHALKANOROS 7
Post Code: 2540
City: NICOSIA
Country: CYPRUS
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]

Membership Information

Members10 Percent: 0
Members25 Percent: 0
Members50 Percent: 0
Members75 Percent: 0
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