Early diagnosis and care

Previous IPOPI PID Forums at the European Parliament

  • EU PID Forum: Breaking the silence on mental health and PIDs

On December 5th, 2023, IPOPI hosted the EU PID Forum on mental health and PIDs at the European Parliament in Brussels (Belgium). The Forum was co-chaired by Members of the European Parliament Estrella Durá Ferrandis (S&D, Spain), Radka Maxová (S&D, Czechia) and Tomáš Zdechovský (EPP, Czechia).

  • EU PID Forum: Navigating the Complexities of Pharmaceutical Legislation 

On June 7th, 2023, IPOPI hosted the EU PID Forum on the revision of the pharmaceutical legislation at the European Parliament in Brussels (Belgium). The Forum was co-chaired by Members of the European Parliament Billy Kelleher (Renew, Ireland), Cyrus Engerer (S&D, Malta) and Tomislav Sokol (EPP, Croatia).

  • EU PID Forum: The EU’s SoHO regulation proposal and its impact on patients with PIDs

On January 26, 2023, IPOPI hosted its 22nd EU PID Forum on the legislation of substances of human origin at the European Parliament in Brussels, Belgium. This Forum was co-chaired by the Members of the European Parliament Katerina Konecna (the Left, Czechia) and Nicolás González Casares (S&D, Spain).

  • 21st IPOPI EU PID Forum – Medicine shortages in the EU: the case of immunoglobulin and PIDs
    On September 8, 2022, IPOPI held its 21st PID Forum on “Medicine shortages in the EU: the case of immunoglobulin and PIDs”. This virtual event will be hosted by Member of the European Parliament (MEP) István Ujhelyi (S&D, Hungary) and MEP Kateřina Konečná (GUE/NGL, Czech Republic). The event was moderated by Mr Johan Prevot, IPOPI Executive Director.
  • 20th IPOPI EU PID Forum – Anti-Microbial Resistance and the PID Perspective
    On May 17, 2022, IPOPI hosted its 20th PID Forum on “Anti-Microbial Resistance and the PID Perspective”. The online event was co-hosted by Members of the European Parliament (MEPs) Juozas Olekas (S&D, Lithuania) and Sarah Wiener (Greens/EFA, Austria). The event was moderated by Mr Johan Prevot, IPOPI Executive Director, and Ms Martine Pergent, IPOPI President.
  • 19th IPOPI EU PID Forum – Digitisation of healthcare: Improving medical care for PID patient
    On December 2, 2021, IPOPI organised its 19th PID Forum titled “Digitisation of healthcare: Improving medical care for PID patients”.The online event was co-hosted by Members of the European Parliament (MEPs) Carlos Zorrinho (S&D, Portugal) and Marina Kaljurand (S&D, Estonia), and moderated by Mr Johan Prevot, Executive Director of IPOPI, together with Ms Martine Pergent, President of the board of IPOPI.
  • 18th IPOPI EU PID Forum – Cross-Border Healthcare Directive: Spotlight on curative treatments for PID patients
    On July 13, 2021, IPOPI organised its 18th PID Forum titled “Cross-Border Healthcare Directive: Spotlight on curative treatments for PID patients”.The online event was co-hosted by Members of the European Parliament (MEPs) Tomislav Sokol (EPP, Croatia); Alex Agius Saliba (S&D, Malta); Radka Maxová (S&D, Czech Republic), and moderated by Mr Johan Prevot, Executive Director of IPOPI.

  • 17th IPOPI EU PID Forum – Primary Immunodeficiencies. Fighting cancer

    IPOPI’s 17th EU PID Forum dedicated “Primary Immunodeficiencies. Fighting cancer” took place online on April 22, 2021.

    The online event was hosted by Member of the European Parliament (MEP), was co-hosted by Members of the European Parliament (MEPs) Ms. Irena Joveva (RE, Slovenia)
    and Ms. Deirdre Clune (EPP, Ireland), and moderated by Mr. Johan Prevot, Executive Director of IPOPI.

    Participants highlighted the complex relation between primary immunodeficiencies (PIDs) and cancer.
    In this regard, IPOPI made key recommendations for addressing the needs of cancer high-risk patient populations such as PIDs.

  • 16th IPOPI EU PID Forum – COVID-19 & Pandemics Management: Protecting the Most Vulnerable
    IPOPI’s 16th EU PID Forum dedicated to Vaccination and PIDs: Focus on the added value of vaccination for primary immunodeficiency patients took place online on December 3, 2020.The online event was hosted by Member of the European Parliament (MEP), Ms. Maria da Graça Carvalho (EPP, Portugal), and moderated by Ms. Martine Pergent, President of IPOPI.

    Vaccine hesitancy is a major challenge across Europe, however, COVID-19 has shed a new light to this situation, particularly to concepts such as herd immunity, risk groups, vaccination, new vaccine types – familiar concepts in the PID community.

15th IPOPI EU PID Forum

The IPOPI 15th EU PID Forum was held online on November 18, 2020, and dedicated to “Newborn screening to strengthen early diagnosis of primary immunodeficiencies: Germany as good practice example for Europe?”. It was held under the patronage of the German Member of Parliament (MP) Erich Irlstorfer and co-organised by the International Patient Organisation for Primary Immunodeficiencies (IPOPI) and the German patient organisation for congenital immunodeficiencies (dsai e.V.).

14th IPOPI EU PID Forum

IPOPI’s 14th EU PID Forum dedicated to COVID-19 & Pandemics Management: Protecting the Most Vulnerable” took place online on September 30, 2020. The online event was hosted by Member of the European Parliament (MEP), Mr. Tomislav Sokol (EPP, Croatia), and moderated by Mr Johan Prevot, IPOPI’s Executive Director.

13th IPOPI EU PID Forum

On Wednesday, 4th December 2019, IPOPI organised its 13th PID Forum entitled “Newborn Screening for Rare
Diseases. A PID Perspective” at the European Parliament in Brussels (Belgium). The event was co-hosted by the following Members of the European Parliament (MEP): Manuel Pizarro (Social and Democrats, Portugal), Tilly Metz (Greens/EFA, Luxembourg), Sirpa Pietikäinen (European People’s Party, Finland) and Irena Joveva (Renew Europe, Slovenia).

12th IPOPI EU PID Forum

In anticipation of the upcoming EU Parliament elections, IPOPI held its 12th PID Forum on the topic “Rare Disease priorities in the European Parliament 2019-2024: the voice of PID patients” at the European Parliament (Brussels, Belgium) on November 27, 2018. This edition was chaired by José Inácio Faria MEP (EPP, Portugal) and had interventions from Members of the European Parliament representing five political groups: Dr Anna Zaborska (EPP, Slovakia), Mrs Sirpa Pietikainen (EPP; Finland), Demetris Papadakis (S&D, Cyprus ), Norica Nicolai (ALDE, Romania ), Ms Tilly Metz (Greens/EFA, Luxembourg ), Mr Takis Hadjigeorgiou (GUE/NGL, Cyprus).

11th IPOPI EU PID Forum

On June 27th, 2018, the International Patient Organisation for Primary Immunodeficiencies (IPOPI) organised its 11th PID Forum called “Access to paediatric medicines: the case of PIDs/Towards the revision of Paediatric Regulation” at the European Parliament in Brussels (Belgium). The event was co-chaired by the Member of the European Parliament (MEP) Mr José Inácio Faria (EPP, Portugal) and by MEP Dr Elena Gentile (S&D, Italy), and supported by MEP Mr Tomáš Zdechovský (EPP, Czech Republic).

10th IPOPI EU PID Forum

On Wednesday 22 November 2017, IPOPI organised its 10th EU PID Forum “Tackling the diagnostic odyssey in rare diseases through ERNs: the case of PIDs” at the European Parliament in Brussels (Belgium). Chaired by the Member of the European Parliament Mr José Inácio Faria (Portugal), and supported by MEP Rory Palmer (UK) and MEP Nessa Childers (Ireland), the meeting brought together representatives of the European Commission, Permanent Representations, PID patients, academics and healthcare professionals to discuss an issue of key importance across the rare disease field – that of diagnosis.

9th IPOPI EU PID Forum 

IPOPI’s 9th PID Forum dedicated to ‘Growing older with a PID: transition of care and ageing’ took place at the European Parliament on June 22, 2017. The event was hosted by Member of the European Parliament (MEP) Dr Elena Gentile (S&D Italy), supported by Mr Carlos Zorrinho (S&D Portugal) and counted with the participation of Ms Sirpa Pietikainen (EPP, Finland).

A resulting set of Recommendations on PID transition care and ageing was released after the meeting.

8th IPOPI EU PID Forum – Don’t Brexit on Rare Diseases Patients

IPOPI’s 8th Primary Immunodeficiency Forum took place at the European Parliament on January 24 and focused on the impact of Brexit for Rare Diseases patients under the motto Don’t Brexit on Rare Diseases Patients – the case of primary immunodeficiencies. Members of the European Parliament (MEPs) Carlos Zorrinho (S&D, Portugal) and Seb Dance (S&D, UK) chaired the event and MEPs Linda McAvan, Catherine Bearder, Mairead McGuinness, Marian Harkin and Glenis Willmott offered their support to IPOPI’s efforts.

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7th IPOPI EU PID Forum – Tackling PID care disparities in the EU, October 12, 2016

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6th IPOPI EU PID Forum – Principles of Care for Primary Immunodeficiencies, December 7, 2015

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5th IPOPI EU PID Forum – A comprehensive framework of care and policy for PIDs, December 4, 2014

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4th IPOPI EU PID Forum – Cross-border Healthcare and PIDs, January 29, 2014

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3th IPOPI EU PID Forum – National Plans for Rare Diseases: Centers of reference and patients’ registries, September 26, 2012

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2nd IPOPI EU PID Forum – Health Technology Assessments, December 6, 2011

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1st IPOPI EU PID Forum – SCID Newborn Screening, Brussels, June 15, 2011

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