News

Biotest, BPL, LFB, and Octapharma joined an alliance formed by CSL Behring and Takeda Pharmaceutical Company Limited to develop a potential plasma-derived therapy…

IPOPI just published an Open Letter calling international, regional and national authorities to ensuring sufficient blood and plasma supply during and after the…

IPOPI has gathered the most pressing COVID 19 and PIDs questions received from the NMOs into a FAQs page. Stay tunned for further updates! The FAQs page covers…

IPOPI published a Joint Statement together with ESID, INGID, APSID, ARAPID, ASID, CIS, LASID and SEAPID on the COVID 19 epidemics. The Statement covers general…

The new Coronavirus is a respiratory virus that can be spread from person-to-person and is a risk for primary immunodeficiency (PID) patients. PID patients should…

The EU level Call to Action on Newborn Screening for Rare Diseases launched by IPOPI, the European Society for Immunodeficiencies (ESID) and the International…

The much-awaited latest IUIS Primary Immunodeficiencies classification list was published on January 10, 2020, featuring 416 human inborn errors of immunity, categorized…

IPOPI is glad to announce the publication of a new series of primary immunodeficiencies (PID) information leaflets. The new series comprises 3 leaflets dedicated…

IPOPI, the International Patient Organisation for Primary Immunodeficiencies welcomed 750 participants interested in learning more about diagnosis and clinical…

IPOPI is launching today its flash campaign PID patients need more plasma donors dedicated to the worldwide need for more plasma donors and more plasma, the starting…

IPOPI held 3rd Clinical Care Webinar on 26 September, on Immunoglobulin therapies: From good to best practice and the invited speaker was Professor Troy Torgerson…

IPOPI’s 2018 Review of Activities and Achievements was published today! 2018 was a major year for IPOPI – we gathered our members in Lisbon for the Global…

Primary immunodeficiency (PID) diagnostic tests have been included in the World Health Organization (WHO)’s Essential Diagnostics List (EDL) published by WHO…

The European Medicines Agency (EMA) recently confirmed that IPOPI’s application to renew its mandate on the Patients and Consumers Working Party (PCWP) was successful…

IPOPI held a Regional African Patients Meeting in Dakar, Senegal during the 11th and 12th of April 2019. The meeting was organised back to back with the 6th ASID…

IPOPI has published a manifesto entitled  “Rare disease priorities in the European Parliament: 2019-2024: the voice of PID patients" on the basis of the discussions…

IPOPI was pleased to organise its 2nd webinar on primary immunodeficiencies’ (PIDs) clinical care on February 6th, 2019, on the topic of ‘Essentials on PID…

Early bird registration is now open for IPIC2019! Register today to benefit from the best rates IPOPI has to offer. Don’t miss out on your chance to benefit…

Mrs Jose Drabwell, IPOPI President, and Mr Mr Ahmed Aboutaleb, Mayor of Rotterdam

IPOPI has since 2011 been producing primary immunodeficiencies (PID) information and a new series has just been published. This last series comprises 3 leaflets…

IPOPI is concerned by recent developments in several countries that may restrict access to the most suitable immunoglobulin (IG) therapy for individual patients…

The Speakers and Organisers of the Clinical Updates Workshop

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…

IPOPI launched PID GENIUS, the first mobile application developed by a PID patient organisation for worldwide use.

The International Patient Organisation for Primary Immunodeficiencies (IPOPI) welcomed over 600 participants interested in learning more about diagnosis and clinical…

IPIC2019 will be held in Europe in the cosmopolitan city of Madrid on 6-8 November 2019!

IPIC2017 which will take place in the vibrant city of Dubai on 8-10 November 2017! The congress programme promises to be even more exciting this time featuring…

IPOPI is celebrating its 25th Anniversary and we pleased to celebrate this major milestone with the...

IPOPI organised its 9th EU PID Forum on ‘Growing older with a PID: transition of care and ageing’ at the European Parliament on June 22, 2017. The meeting was hosted by Members of the European Parliament (MEPs) 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).

IPOPI held a two-day meeting in Jakarta, Indonesia, in collaboration with the Indonesian PID Patient Society (IPIPS), the Mangunkusumo Hospital in Jakarta and…

IPOPI, PID UK (UK primary immunodeficiencies patient group) and Prof Bobby Gaspar organised a Parliamentary Reception on newborn screening for Severe Combined…

Leire Solis represented IPOPI at the Eurordis (Rare Diseases Europe) Membership Meeting held in Budapest on May 19-20, 2017. Before the Membership Meeting a session…

The International Organisation for Primary Immunodeficiencies (IPOPI) is launching today a set of Recommendations for UK and EU policy makers to protect rare disease…

IPOPI joins the rest of the primary immunodeficiency (PID) community in celebrating Rare Disease day today! This year's campaign focuses on the importance of increasing research in rare diseases.

Glenis Willmott MEP published an article on 21 February on the potential impact of Brexit on rare disease research and people suffering with less prevalent disorders.…

European Member States approved on December 15 the proposal for a Rare Immunodeficiency, Autoinflammatory and Autoimmune (RITA) European Reference Network. IPOPI…

The New Zealand Health Minister, Jonathan Coleman, announced on 7 November 2016 the implementation of newborn screening for severe combined immunodeficiencies (SCID)…

IPOPI held its XIVth Biennial meeting in the fantastic city of Barcelona, Spain, on 21-24 September, in conjunction with the ESID and INGID Congresses. IPOPI Biennial…

IPOPI’s 2015 Review of Activities and Achievements is out and you can now read it online! This report is an overview of all IPOPI's activities towards the…

GlaxoSmithKline (GSK), Fondazione Telethon (Telethon) and Ospedale San Raffaele (OSR) recently announced that the European Commission has approved Strimvelis,…

Shire today completed its previously announced combination with Baxalta forming the leading global company in rare diseases therapies including for primary immunodeficiencies.…

SCIDNET, a partnership initiative in which IPOPI is participating, has launched its new website www.scidnet.eu SCIDNET is an ambitious project, financially supported…

Participants to the IPOPI 2016 World Primary Immunodeficiency Week Policy event identified European Reference Networks as an essential tool to improve care for PID…

On the occasion of World Primary Immunodeficiency Week, IPOPI organised on Tuesday 26th April a policy event at the European Parliament in Brussels. Members of the…

IPOPI is pleased to announce the launch of a new Primary Immunodeficiency Burden of Treatment study in partnership with the University of Sheffield (UK) and…

Two parliamentary questions have been tabled to the European Commission on the implementation of the Primary Immunodeficiencies Principles of Care and on Newborn…

IPOPI is pleased to announce the launch of IPOPI TV, a brand new online tool for the PID community! You can now find all IPOPI’s video content including patient…

Zika virus recent outbreaks in different regions and particularly in Central and South America have caught the attention of health authorities. Zika virus infections…

Shire plc and Baxalta Incorporated announced today that both companies have reached an agreement under which Shire will combine with Baxalta. This union will result…

IPIC2015 was a great success with 700 participants from over 70 countries in attendance! The second International Primary Immunodeficiencies Congress was held…

IPOPI in collaboration with its Italian National Member Organisation Associazone Immunodeficienze Primitive (AIP) and Italian experts in the field held a meeting…

PLUS, the Platform of Plasma Protein Users, which represents organisations of patients living with rare plasma related disorders and rare bleeding disorders, recently…

Over 60 patient representatives from 30 countries are gathering this afternoon in Madrid, Spain, for the inauguration of Rare Diseases International (RDI) and to…

GSK (GlaxoSmithKline), Fondazione Telethon (Telethon) and Ospedale San Raffaele (OSR) recently announced the submission of a marketing application to the European…

The European Commission (EC) published in April a report on ‘An EU-wide overview of the market of blood, blood components and plasma derivatives focusing on their…

The Council of Europe adopted an important Resolution about Therapies for Primary Immunodeficiencies. Very exciting news that will help our members' advocacy efforts…

IPOPI is proud to announce the launch of a new website section dedicated to newborn screening for Severe Combined Immunodeficiencies (NBS for SCID). This new…

Over the last two years, IPOPI combined its efforts with a worldwide multi-disciplinary team of specialists to develop the “Primary Immunodeficiencies Principles…

IPOPI is releasing today its first patient testimonial video. Jose Drabwell, Common Variable Immunodeficiency (CVID) patient and IPOPI President is the first one…

IPOPI in collaboration with the Care-for-Rare Foundation, co-organised the “First Care-for-Rare European-South East Asian PID Meeting – from Bench to Bedside”…

Over the last two years, IPOPI combined its efforts with a worldwide multi-disciplinary team of specialists to develop the “Primary Immunodeficiencies Principles…

IPOPI held yesterday its 5th PID Forum at the European Parliament in Brussels (Belgium), which was co-chaired by Dr Cristian Busoi MEP and Dr Boreslaw Piecha MEP.…

Because infectious diseases are a major source of morbidity and mortality in the majority of patients with primary immunodeficiencies (PIDs), the application of…

The Autumn 2014 edition of IPOPI's e-News is out and can be accessed here. Check out the new section NMO Focus with an article about the Portuguese NMO APDIP and…

IPOPI is now a member of Health First Europe (HFE). As a follow-up from the participation in HFE’s General Assembly IPOPI requested membership to this alliance…

The 2013 IPOPI Review of Activities and Achievements is out and available online! In this report find out about IPOPI's activities and achievements during the past…

IPOPI is pleased to announce the publication of its survey manuscript looking at Improving current immunoglobulin therapy for patients with primary immunodeficiency:…

The 4th edition of World Primary Immunodefiencies Week (WPIW) starts today with the theme “Test! Diagnose! Treat!”. From April 22nd to the 29th join us in a…