EUROPEAN ORGANISATION FOR RARE DISEASES

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

https://download2.eurordis.org/membership/members.pdf

Promotes their own interests or the collective interests of their members

Jan 2022 - Dec 2022

600,000€ - 699,999€

600,000€ - 699,999€

None declared

eHealth Stakeholder Group#E02769#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=2769 #Member #C#Civil society, Other#Disability Platform#E03820#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=3820 #Observer #C#Civil society#Sub-group on Independent Living#SUB-GROUP ON EUROPEAN DISABILITY CARD

N/A

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.

None declared

23 meetings found. Download meetings

The list below only covers meetings held since November 2014 with commissioners, their cabinet members or directors-general at the European Commission; other lobby meetings with lower-level staff may have taken place, but the European Commission doesn't proactively publish information about these meetings. For more information about which commissioner is responsible for which portfolio, check out this link: https://commissioners.ec.europa.eu/index_en All information below comes from European Commission web pages.

1 July 2024: We have noted that some meetings are appearing in duplicate, ie. some meetings seem to be listed twice. This seems to be because the Commission changes some element of a meeting data after the meeting has first been listed, which causes LobbyFacts to register it as a new meeting. We are investigating further.

• Date	23 Jul 2024	Location	Brussels
  Subject	Meeting with EURORDIS to discuss the Commission’s actions on rare diseases
  Cabinet	Cabinet of Commissioner Stella Kyriakides
  Attending	Karolina Herbout-Borczak (Cabinet member) Stella Kyriakides (Commissioner)

• Date	21 Feb 2024	Location	Brussels
  Subject	Meeting with National Alliance for Rare Diseases Support Malta to discuss women's health matters.
  Cabinet	Cabinet of Commissioner Helena Dalli
  Attending	Helena Dalli (Commissioner)

• Date	29 Jan 2024	Location	Brussels
  Subject	Exchange of views on the ongoing EU actions on rare diseases
  Cabinet	Cabinet of Commissioner Stella Kyriakides
  Attending	Stella Kyriakides (Commissioner) Karolina Herbout-Borczak (Cabinet member)

• Date	28 Sep 2023	Location	Brussels
  Subject	Meeting of Commissioner Kyriakides with newborn screening associations
  Cabinet	Cabinet of Commissioner Stella Kyriakides
  Portfolio	Health
  Attending	Karolina Herbout-Borczak (Cabinet member) Stella Kyriakides (Commissioner)
  Other Lobbyists	Fundacja SMA International Society for Neonatal Screening

• Date	31 May 2023	Location	Brussels
  Subject	Exchange of views on the pharmaceutical reform
  Cabinet	Cabinet of Commissioner Stella Kyriakides
  Portfolio	Health
  Attending	Karolina Herbout-Borczak (Cabinet member) Giorgios Rossides (Cabinet member)

• Date	06 Dec 2022	Location	Brussels
  Subject	Meeting with representatives of Eurordis
  Cabinet	Cabinet of Commissioner Stella Kyriakides
  Portfolio	Health
  Attending	Karolina Herbout-Borczak (Cabinet member) Stella Kyriakides (Commissioner)

• Date	21 Sep 2022	Location	Brussels
  Subject	Rare diseases
  Cabinet	Cabinet of Commissioner Stella Kyriakides
  Portfolio	Health
  Attending	Stella Kyriakides (Commissioner) Ines Prainsack (Cabinet member)
  Other Lobbyists	Alzheimer Europe European Patients' Forum (EPF)

• Date	26 Jan 2022	Location	Online - Brussels
  Subject	Discussion on the Commissioner work programme related to rare diseases as well as the continued work of EURODIS, in particular its collaborative efforts with the EU's institutions.
  Cabinet	Cabinet of Commissioner Helena Dalli
  Portfolio	Equality
  Attending	Annelisa Cotone (Cabinet member) Helena Dalli (Commissioner)

• Date	02 Dec 2021	Location	Brussels
  Subject	Rare diseases
  Cabinet	Cabinet of Vice-President Margaritis Schinas
  Portfolio	Promoting the European Way of Life
  Attending	Maria Luisa Llano Cardenal (Cabinet member) Margaritis Schinas (Vice-President)

• Date	25 Nov 2021	Location	Webex
  Subject	Follow up to Cssr Kyriakides’ meeting with CSOs on 25/10/2021 on civil society funding through EU4Health
  Cabinet	Cabinet of Commissioner Stella Kyriakides
  Portfolio	Health
  Attending	Giorgios Rossides (Cabinet member)
  Other Lobbyists	Alzheimer Europe

• Date	25 Oct 2021	Location	Brussels
  Subject	VTC Meeting: EU4Health Work Programme 2022 and operating grants.
  Cabinet	Cabinet of Commissioner Stella Kyriakides
  Portfolio	Health
  Attending	Stella Kyriakides (Commissioner)
  Other Lobbyists	European Public Health Alliance

• Date	30 Jul 2021	Location	Virtual meeting
  Subject	Meeting with civil society representatives regarding the EU4health programme.
  Cabinet	Cabinet of Commissioner Stella Kyriakides
  Portfolio	Health
  Attending	Stella Kyriakides (Commissioner)
  Other Lobbyists	European Patients' Forum (EPF)

• Date	17 Jun 2021	Location	Brussels, virtual
  Subject	Exchange of views on rare diseases in the context of the pharmaceutical strategy for Europe and the presentation of EURORDIS Recommendations of the Foresight Study on rare diseases policy
  Cabinet	Cabinet of Commissioner Stella Kyriakides
  Portfolio	Health
  Attending	Karolina Herbout-Borczak (Cabinet member)

• Date	14 Feb 2020	Location	Brussels, Belgium
  Subject	Health Technology Assessment, Rare Diseases
  Cabinet	Cabinet of Commissioner Stella Kyriakides
  Portfolio	Health
  Attending	Olympia Neocleous (Cabinet member)

• Date	20 Jan 2020	Location	Brussels
  Subject	Discussion on cancer
  Cabinet	Cabinet of Commissioner Stella Kyriakides
  Portfolio	Health
  Attending	Stella Kyriakides (Commissioner) Tove Ernst (Cabinet member)
  Other Lobbyists	European Cancer Patient Coalition

• Date	21 Oct 2019	Location	Brussels
  Subject	the Regulation for a European Cooperation on Health Technology Assessment.
  DG	Health and Food Safety
  Attending	Anne Bucher (Director-General)

• Date	14 Feb 2019	Location	Brussels, Belgium
  Subject	courtesy visit, presentation of activities
  DG	Health and Food Safety
  Attending	Anne Bucher (Director-General)

• Date	15 May 2018	Location	Brussels
  Subject	HTA
  Cabinet	Cabinet of Commissioner Vytenis Andriukaitis
  Portfolio	Health & Food Safety
  Attending	Annika Nowak (Cabinet member) Vytenis Andriukaitis (Commissioner)
  Other Lobbyists	ASDM Consulting European Public Health Alliance

• Date	28 Feb 2018	Location	Brussels
  Subject	European Reference Networks
  Cabinet	Cabinet of Commissioner Vytenis Andriukaitis
  Portfolio	Health & Food Safety
  Attending	Vytenis Andriukaitis (Commissioner) Annika Nowak (Cabinet member)

• Date	24 Feb 2016	Location	Brussels
  Subject	Improving access to orphan medicinal products and other rare disease therapies; European Reference Networks
  Cabinet	Cabinet of Commissioner Vytenis Andriukaitis
  Portfolio	Health & Food Safety
  Attending	Paula Duarte Gaspar (Cabinet member) Vytenis Andriukaitis (Commissioner)

• Date	09 Dec 2015	Location	Brussels
  Subject	European Reference Networks in the field of rare diseases; improving access to orphan drugs; platform on rare disease registration
  Cabinet	Cabinet of Commissioner Vytenis Andriukaitis
  Portfolio	Health & Food Safety
  Attending	Annika Nowak (Cabinet member) Paula Duarte Gaspar (Cabinet member)

• Date	08 Oct 2015	Location	Lisbon, Portugal
  Subject	Patient perspective and involvement
  DG	Health and Food Safety
  Attending	Xavier Prats Monné (Director-General)

• Date	24 Feb 2015	Location	Brussels
  Subject	Action on rare diseases, Bridging Inequalities & Giving Patients with Rare Diseases same type of access to treatment and care
  Cabinet	Cabinet of Commissioner Vytenis Andriukaitis
  Portfolio	Health & Food Safety
  Attending	Paula Duarte Gaspar (Cabinet member) Vytenis Andriukaitis (Commissioner)