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EUROPEAN ORGANISATION FOR RARE DISEASES

Acronym: EURORDIS

General Information

Identification Code: 93272076510-87
Website: [object Object]
Entity Form: ASSOCIATION
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 8/30/2011
Last Update: 3/26/2024
EP Accredited Number: 8

Mission & Interests

Goals: EURORDIS-Rare Diseases Europe is a patient-driven alliance of over 1062 patient organisations (POs) active in the field of rare diseases (RD) from 74 countries. It represents the voice of an estimated 30 million citizens in the EU. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services. EURORDIS vision is to enable better lives and cures for people living with a rare disease and its mission is to work across borders and diseases to improve the lives of people living with a rare disease. To this end, EURORDIS-Rare Diseases Europe undertakes activities on behalf of its members: • Raising public awareness on RD • Empowering PLWRD and RD patient groups and strengthening the capacity of rare disease patients’ representatives • Advocating for RD as a public health priority and for national and EU-level (...)
Interests Represented: Promotes their own interests or the collective interests of their members
Interests:
  • Business and industry
  • Digital economy and society
  • Employment and social affairs
  • European neighbourhood policy
  • Institutional affairs
  • Justice and fundamental rights
  • Public health
  • Regional policy
  • Research and innovation
  • Single market
  • Youth
Levels of Interest:
  • european
  • global

Activities

Main EU Legislative Proposals: - All areas of the Commission Communication on Rare Diseases: Europe's challenges and Council Recommendations on an action in the field of rare diseases (2009/C 151/02) - Revision of the Regulation (EC) No 141/2000 on Orphan Medicinal Products (OMP) and Paediatric Regulation (EC) No 1901/2006; and revision of the General Pharmaceutical legislation (Dir. 2001/83/EC and Reg. EC No 726/2004). - Regulation on standards of quality and safety for substances of human origin intended for human application and repealing Directives 2002/98/EC and 2004/23/EC - Proposal for a European Health Data Space Regulation - Implementation of the HTA Regulation (Reg. EC n° 2022/2282) - Implementation of the Cross-border Healthcare Directive and European Reference Networks - Implementation of the In Vitro Diagnostics Regulation - Europe’s Beating Cancer Plan - EU Strategy on Mental Health - 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. - ESF+ and the EASI Programme by DG Employment and Social Affairs, with particular focus on social care.
Communication Activities: All areas for implementation of the above-mentioned initiatives, policies and legislation represent areas of interest for EURORDIS-Rare Diseases Europe and its members, and therefore EURORDIS-Rare Diseases Europe is potentially called to act upon all these relevant files together with other stakeholders involved in the rare diseases fields, such as EU decision-makers, national authorities, private sector, healthcare professionals, HTA bodies, payers and regulators at both EU and national levels. EURORDIS co-manages the Stakeholder Network on Rare Diseases hosted by the EU HPP (Health Policy Platform). EURORDIS-Rare Diseases Europe is the main organiser of the European Conference on Rare Diseases and Orphan Medicinal Products. EURORDIS-Rare Diseases also created an informal network of Members of the European Parliament (Network of Parliamentary Advocates for Rare Diseases, PARD) that are advocates for the rights of people living with a rare disease. Events have been organised at the European Parliament since the launch of the network (Oct 2017) including Rare Disease Week (Feb 2023) and a workshop on Mental Health and vulnerable populations in October 2023. EURORDIS leads the global awareness raising campaign on Rare Disease Day (https://www.rarediseaseday.org/), celebrated every year on 29 (28) February with hundreds of events across over 100 countries. On Rare Disease Day 20024, the European Parliament’s SANT subcommittee organised an exchange of views that EURORDIS and its members. EURORDIS publishes position papers and other policy documents based on extensive consultation with members and, where relevant, other stakeholders. A list can be found here:   https://www.eurordis.org/resources/ EURORDIS also leads the “Rare Barometer Voices” initiative, a survey programme based on a database of thousands of people living with a rare disease. The results of its studies are published here: https://www.eurordis.org/voices EURORDIS is part of the “EU4Health Civil Society Alliance” campaign (https://eu4health.eu/) gathering a number of European health organisations to promote a stronger role for the EU in the field of health promotion. Last but not least, EURORDIS is a beneficiary of the Operating Grant of the EU4Health programme, which enables the organisation to function and perform most of the activities described above.
EU Supported Forums and Platforms: Sub-group on social services#E03820/5#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=104592 #OBSERVER #C#Civil societySub-group on Independent Living#E03820/4#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=103715 #OBSERVER #C#Civil societyDisability Platform#E03820#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=3820 #OBSERVER #C#Civil societyeHealth Stakeholder Group#E02769#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=2769 #MEMBER #C#Civil society#Other
Inter-institutional or Unofficial Groupings: N/A

Head Office

Address: rue Didot, 96Plateforme Maladies Rares
Post Code: 75014
City: Paris
Country: FRANCE
Phone: [object Object]

EU Office

Address: rue Didot, 96Plateforme Maladies Rares
Post Code: 75014
City: Paris
Country: FRANCE
Phone: [object Object]

Financial Data

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

Membership Information

Members10 Percent: 0
Members25 Percent: 3
Members50 Percent: 5
Members75 Percent: 1
Members: 11
Members F T E: 6
Info Members: Some of our colleagues are involved in Advocacy Public affairs in full time, some of them are involved on complementary basis while working on other more specific files (research, diagnosis, treatment,surveys, etc)

Structure

Structure Type: Structure
Is Member Of: https://download2.eurordis.org/membership/members.pdf
Organisation Members: External networks: - EUROPEAN MEDICINES AGENCY (COMP, PDCO, PRAC, PCWP, SAWP, CHMP, HMPC, Task for on Registries, EU Clinical Trial Information system, Topic Group on Data Protection/Secondary use of Data, ETF) - EUROPEAN COMMISSION: EU Health Policy Platform (Stakeholder Network for Rare Diseases & Ukraine); EU Disability Platform (observer) - EUROPEAN PARLIAMENT: European network of Parliamentary Advocates for rare diseases - HEALTH TECHNOLOGY ASSESSMENT: HTA network - Medicine Evaluation Committee (MEDEV) and Mechanism Coordinated Access to orphan medicinal products (MoCA) - European Reference Networks (ERNs) via ePAGs Member of European Not-for-Profit Organisations & Initiatives: - EUROPEAN PATIENTS’ FORUM (EPF) - EU4Health Civil Society Alliance - EDF: European Disability Forum - EFGCP: European Forum for Good Clinical Practice - FIPRA – International Policy Advisors - Rare Cancer Europe - SOCIAL PLATFORM – European Platform of European Social NGOs - Maladies Rares Info Service (French Helpline for RDs) - Mental Health Europe - WECAN: informal network of leaders of cancer patient umbrella organizations active in Europe - FRIENDS OF EUROPE - EUPATI: Patient Engagement through Education - Get-Real Institute - Rare Disease Platform in Paris Partnering with European Not-for-Profit Organisations & Initiatives: - EFPIA: European Federation of Pharmaceutical Industries and Associations Think Tank, RD Moonshot; and dialogue on Real World Evidence - European Expert Group on Orphan Drug Incentives (OD Expert Group) - EUROPABIO Patients Advisory Group - EUCOPE: European Confederation of Pharmaceutical Entrepreneurs International Institutions, Not-for-Profit Organisations & Initiatives: - NGO Committee for Rare Diseases - International Alliance of patient organisations (IAPO) - IRDiRC – International Rare Diseases Research Consortium - Rare Diseases International (RDI) - Global Commission to end the diagnostic odyssey for children - ORPHANET - ICORD: International Conference on Rare Diseases and Orphan Drugs (founding member) - PFMD - Patient Focused Medicines Development Initiative - CIOMS - Council for International Organizations of Medical Sciences - International partnerships (MoUs) with rare disease umbrella organisations: NORD (USA), CORD (Canada), JPA (Japan), RVA (Australia), CORD (China), RADOIR (Iran) European networks (mostly EU co-funded projects): - BBMRI Stakeholders Forum - HTx -Next Generation HTA - OpenMedicine - C4C (Connect 4 Children) - CORBEL-MIUF - Solve-RD - reCOVID consortium IMI2 - COST ACTION 15105 (drug shortages) - EJP RD – European Joint Programme on RD - EUCAPA - European Capacity Building for Patients - MoreEuropa - More Effectively Using Registries to support Patient-centered Regulatory and HTA decision-making - REMEDI4ALL - The European Platform for Medicines Repurposing - Screen4Care - Shortening the path to RD diagnosis by using newborn genetic screening and digital technologies - VACCELERATE - pan-European backbone for the acceleration of phase 2 & 3 COVID-19 vaccine trials - FACILITATE - Framework for Clinical Trial Participants’ Data Reutilization for a Fully Transparent and Ethical Ecosystem - ERICA – European Rare Disease Research Coordination and Support Action - TEHDAS – Towards the European Health Data Space - LIVES Partnership with Learned Societies: - European Federation of Internal Medicine (EFIM) - European Hospital & Healthcare Federation (HOPE) - International Federation of Social Workers Europe (IFSW-Europe) - European Society of Human Genetics (ESHG) - International Society for Pharmaco-economics and Outcomes Research (ISPOR) - European Connected Health Alliance – ECHAlliance - European Union of Medical Specialists – EUMS - European Alliance for Personalised Medicine