NMO NEWS BITES The newsletter for IPOPI's national member organisations
Dear NMOs,
We are happy to introduce the launch of our new NMO newsletter, solely prepared for our members. This newsletter will give you the latest information easily accessible in one place and will provide an overview of ongoing projects, deadlines, upcoming meetings among other things. This first edition is dominated by updates on the SARS-CoV-2 pandemic. IPOPI is working hard to provide evidence-based information to our members in these challenging times and our thoughts go out to all who are affected.
THE SARS-COV-2 - COVID-19 PANDEMIC
The SARS-CoV-2 - COVID-19 pandemic
IPOPI is committed to closely monitor the SARS-CoV-2 pandemic and to share evidence-based and expert validated information to the global PID patients community and to our stakeholders on the IPOPI website.
2nd COVID-19 Question & Answer Conference Call, 27 March 3.30 PM CET
Do you have questions on the COVID-19 pandemic? We invite you to participate in the upcoming conference call for NMOs: 27 March 3.30 PM Central European Time.
- The questions should be sent in advance. - Please send your question to julia@ipopi.org latest Wednesday 25 March.
How to connect
The meeting will take place on Zoom, accessible by computer or phone (see links below).
If you would like to call in to participate, find the number to call from your country: https://zoom.us/u/amdtUJjaP
GLOBAL EVENTS
COVID-19's implications for WPIW:
10 weeks for the 10 years' anniversary
In light of the COVID-19 pandemic the World PI Week Board has decided to extend this year's campaign to protect public health & the health of PID patients. WPIW 2020 will run for 10 weeks, 22 April - 1 July 2020, to celebrate the 10th anniversary. All campaign supporters are encouraged to join online activities if in-person events are not advisable in their region.
IPOPI invites all NMOs to the Global Patients Meeting, organised in collaboration with INGID and ESID. This year's meeting will take place in Birmingham, United Kingdom,14-17 October and offer an exciting programme with educational session and workshops for the participating NMOs.The registration will open shortly, more info below.
A highlight of the Global Patients Meeting is the Vassalli andLeBien Awards, both given during the IPOPI PID Champions Award Ceremony, Thursday 15 Oct 2020. All NMOs who participate in the Global Patients Meeting are invited to attend the dinner. Info on how to register for the dinner will be shared shortly with all participants.
Nominate for the Vassalli Award!
The Luciano Vassalli Awards recognises a young person (max 30 years old) who has made a difference for the PID community. For this award the NMOs nominate the candidates and the IPOPI Board of Directors will select a winner among the nominees. Please note that each NMO has one nomination.
The LeBien Award, established in honour of Bob and Sara LeBien, is dedicated to an adult who has improved conditions for people with a PID internationally. The candidates are chosen by the IPOPI Board of Directors and the NMOs vote for their preferred choice. Please note that each NMO has one vote.
IPOPI Regional South East Asian Doctors & Patient Meeting
Sep 16-17 2020, Kyoto, Japan
It's finally time for a new regional South East Asian patient meeting, this time in Kyoto, Japan 16-17 September. Are you a patient representative from one of our NMOs in the region and would like to learn more? Send your question to julia@ipopi.org
STAKEHOLDER NEWS
The Medical Advisory Panel Section
New IUIS PID classification!
The newclassification of Inborn Errors of Immunity/Primary Immunodeficiencies was published by the International Union of Immunological Societies Expert Committee in January, documenting416 PIDs. These advances are contributing to greater understanding of the molecular, cellular, and immunological mechanisms of disease, thereby enhancing immunological knowledge while improving the management of patients and their families.
In light of the recent outbreak of SARS-CoV-2 the Plasma Protein Therapeutics Association (PPTA) has released a memorandum stating that the virus is not a concern to the safety of plasma derived medicinal products such as immunoglobulin.
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