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Thalassaemia International Federation

Acronym: TIF

General Information

Identification Code: 678285732160-11
Website: [object Object]
Entity Form: Company of Limited Liability by Guarantee
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 8/3/2018
Last Update: 11/14/2023
EP Accredited Number: 1

Mission & Interests

Goals: Mission: To develop and establish National Control Programmes for the prevention and management of haemoglobinopathies in all affected countries. // Vision: To help ensure equal access to quality health care for every patient with thalassemia and other haemoglobin disorders around the world. // Overall Purpose: To act as the global united voice of patients with haemoglobinopathies and particularly for patients with thalassemia. // Values: (i) Transparency, ethos, accountability, independence and patient centeredness. Objectives, decisions, activities, actions including policy development, communication, and financial issues are governed by the above values, with the patients’ benefit being the driving force. (ii) Health and social equity: Fight for securing patients’ rights for equal access to quality health and social services regardless of age, gender, ethnicity, political belief or cultural and religious convictions.
Interests Represented: Does not represent commercial interests
Interests:
  • Communication
  • Education and training
  • Employment and social affairs
  • External relations
  • Humanitarian aid and civil protection
  • International co-operation and development
  • Justice and fundamental rights
  • Migration and asylum
  • Public health
  • Regional policy
  • Research and innovation
Levels of Interest:
  • sub-national
  • european
  • global
  • national

Activities

Main EU Legislative Proposals: The Thalassaemia International Federation is interested in the following subject areas: (a) Blood Safety and Availability: Proposal for a Regulation on substances of human origin; Directive 2002/98/EC of the European Parliament and of the Council of 27 January 2003 setting standards of quality and safety for the collection, testing, processing, storage and distribution of human blood and blood components and amending Directive 2001/83/EC; Commission Directive 2004/33/EC of 22 March 2004 implementing Directive 2002/98/EC of the European Parliament and of the Council as regards certain technical requirements for blood and blood components; Commission Directive 2005/61/EC of 30 September 2005 implementing Directive 2002/98/EC of the European Parliament and of the Council as regards traceability requirements and notification of serious adverse reactions and events; Commission Directive 2005/62/EC of 30 September 2005 implementing Directive 2002/98/EC of the European Parliament and of the Council as regards Community standards and specifications relating to a quality system for blood establishments; Commission Directive 2014/110/EU of 17 December 2014 amending Directive 2004/33/EC as regards temporary deferral criteria for donors of allogeneic blood donations; Commission Directive (EU) 2016/1214 of 25 July 2016 amending Directive 2005/62/EC as regards quality system standards and specifications for blood establishments // (b) Safety, Availability and Accessibility of Medicines: Commission proposal for the Pharmaceutical Regulation; Commission proposal for the Pharmaceutical Directive; Directive 2001/83/EC of the European Parliament and the Council of 6 November 2001 on the Community code relating to medicinal products for human use; Regulation (EC) No 726/2004 of the European Parliament and of the Council of 31 March 2004 laying down Community procedures for the authorisation and supervision of medicinal products for human and veterinary use and establishing a European Medicines Agency / Pharmacovigilance: Directive 2010/84/EU of the European Parliament and of the Council of 15 December 2010 amending, as regards pharmacovigilance, Directive 2001/83/EC on the Community code relating to medicinal products for human use / Orphan Medicinal Products: Regulation (EC) No 141/2000 of the European Parliament and of the Council of 16 December 1999 on orphan medicinal products / Clinical Trials: Regulation (EU) No 536/2014 of the European Parliament and the Council of 16 April 2014 / ATMPs: Regulation (EC) No 1394/2007 of the European Parliament and of the Council of 13 November 2007 on advanced therapy medicinal products and amending Directive 2001/83/EC and Regulation (EC) No 726/2004 / Health Technology Assessment: Regulation (EU) 2021/2282 of the European Parliament and of the Council of 15 December 2021 on health technology assessment and amending Directive 2011/24/EU // (c) Cross-border Healthcare: Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients’ rights in cross-border healthcare // (d) Rare Diseases: Council Recommendation of 8 June 2009 on an action in the field of rare diseases // (e) Migrants’ Health: European Agenda on Migration // (f) Noncommunicable Diseases: Action Plan for the Prevention and Control of Noncommunicable Diseases in the WHO European Region 2016–2025
Communication Activities: The Thalassaemia International Federation (TIF), having as a mission to ensure equal access to quality health care for every patient with thalassemia and other haemoglobin disorders around the world, seeks to influence the formulation or implementation of policies in all the aforementioned areas by: 1) preparing and circulating information material and position papers; 2) inviting EU officials to awareness-raising events, meetings and conferences organised in Cyprus and abroad; 3) participating in public consultations on existing EU policies and legislation; 4) arranging one-to-one meetings with EU officials and Members of the Parliament (MEPs) to discuss thalassaemia-related issues in affected countries. In addition, TIF had concluded a 4-year Framework Partnership Agreement with the European Commission (CHAFEA/HADEA) that entailed regular interaction with the MEPs and other EU officials [See: THALassaemia In Action (THALIA) - Framework Partnership Agreement 2018-2021 (No 785243)]. This strategic collaboration was renewed for years 2022 and 2023 through Specific Grant Agreements 101083240 and 101124809, respectively.
Inter-institutional or Unofficial Groupings: Unofficial groupings

Head Office

Address: 31, Ifigenias Street, 3rd Floor2007 Strovolos
Post Code: 2083 Strovolos
City: Nicosia
Country: CYPRUS
Phone: [object Object]

EU Office

Address: 31, Ifigenias Street, 3rd Floor2007 Strovolos
Post Code: 2083 Strovolos
City: Nicosia
Country: CYPRUS
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary Information: TIF's sources of income are both public and private. Funding from the private sector is collected according to TIF's Corporate and Financial Support Policy, adopted in November 2009 by the Board of Directors and valid to-date, outlining the Federation’s policy with regard to fundraising from industry, the allocation of resources and complete independence of activities from all commercial interests. It is available at: https://thalassaemia.org.cy/whowe-are/transparency-statement/

Membership Information

Members10 Percent: 0
Members25 Percent: 0
Members50 Percent: 0
Members75 Percent: 1
Members: 1
Members F T E: 0.75
Info Members: The Thalassaemia International Federation has one Policy Officer at its office, devoting 75% of their time on the activities described under Heading No 9.

Structure

Structure Type: Structure
Is Member Of: https://thalassaemia.org.cy/tif-members/
Organisation Members: https://thalassaemia.org.cy/who-we-are/collaborations/