News
Screen4Rare and MEP Alliance for Rare Disease Newborn Screening
The meeting report is now available
EMA renews IPOPI membership at PCWP
Renewal of IPOPI’s membership at the PCWP
‘Towards Achieving Equity and Innovation in Newborn Screening across Europe’
Screen4Rare collaborations
IPOPI is ready to play Q-ID!
Q-ID - the quiz app for the PID community!
Three new IPOPI PID information leaflets published
Essentials of PID Diagnosis, Rheumatological, Autoimmune & Autoinflammatory Crossovers, and Targeted Therapies for PIDs
New publication presenting the PID environment in 60 countries
Read IPOPI’s latest publication on the PID Principles of Care, measured through the PID Life Index
IPOPI’s 2020 Review of Activities and Achievements
GPM, Webinars, PID Forum and more, this past 2020
PID Patient true stories: awareness campaign on the need of plasma
PID patients true stories dedicated to addressing the worldwide need for more regionally balanced plasma collection
IPOPI now part of TRANSFORM
New stakeholder of the European Alliance for Transformative Therapies
Two milestone EU Events on Newborn Screening
Launch Meeting of the ERN Expert Platform on NBS and the Slovenian Presidency Event on NBS
In Memoriam – Sven Fandrup
IPOPI’s Board of Directors announces the passing of former Board Member Sven Fandrup
Survey on PID and COVID-19 vax side effects and hesitancy
New deadline - September 30!
IPOPI and SAFE oppose calls to reduce IG for PID patients
Read the Position Paper
The International Neonatal Screening Day is born!
IPOPI, in partnership with ISNS and the ESID, announces the launch of the first International Neonatal Screening Day on June 28, 2021.
SAFE Task Force releases two position statements
Two papers aimed for NMO representatives use in their advocacy work on access to immunoglobulin replacement therapies
Screen4Rare organises two milestone meetings
S4R organised two high-level meetings
PIDs and autoinflammation mini documentary
Mini documentary dedicated to the crossover of primary immunodeficiencies (PID) and autoinflammatory and rheumatological manifestations
IPIC has moved!
IPOPI is delighted to invite you all to participate in the next International Primary Immunodeficiencies Congress - IPIC 5th Edition - which will be held in Vilamoura (Algarve), Portugal, on 27-29 April 2022!
IPIC was initially planned to take place in Germany in November 2021.
Six new IPOPI PID information leaflets published
PIDs and Skin, PIDs and Cancer, Hyper IgE Syndrome, Ataxia-Telangiectasia, A Guide for Hepatologists and Genetic Diagnosis of PIDs
More PID diagnostic tests included in the WHO EDL
For the second year in a row, tests for diagnosing primary immunodeficiencies (PIDs) have been included in this Model List.
IPOPI launches new strategic plan
In the last 24 months, IPOPI undertook a thorough and comprehensive process to develop its new 5-year strategic plan for the 2021-2025 period.
COVID-19 Learning Expedition Report released
IPOPI launched the COVID-19 Learning Expedition (LEX) in July 2020, to identify, analyse and provide recommendations on issues brought about by the COVID-19 pandemic for patients with primary immunodeficiency (PID).
IPOPI’s PID Life Index – the PID environment around the globe
An interactive tool built on 6 key principles of care that measures the status of the PID healthcare environment across the globe
IPOPI Clinical Care Webinars – year-round PID Education
IPOPI Clinical Care Webinars are aimed at patient group leaders, clinicians and nurses with an interest in PID clinical care management
IPOPI XVI Global Patients Meeting – First ever online!
IPOPI had the great pleasure of welcoming 200 delegates from 40 countries from all over the world to the XVI Global Patients Meeting (GPM).
