e-News Spring 2017
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From the Chairperson's desk

Whether Spring is in the air or Autumn around the corner, whether you live in the Northern or Southern Hemisphere, one thing is sure, you will be hearing about primary immunodeficiencies next month.
IPOPI is working hard on its upcoming Regional Patients Meeting in Zambia, Africa, and with World Primary Immunodeficiencies Week around the corner, IPOPI and the national member organisations (NMOs) are preparing a range of awareness campaigns designed to put PIDs on the map at the global level.

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IPOPI News

Don’t Brexit on Rare Diseases Patients

8th IPOPI PID Forum
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 - the case of PIDs.
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Get ready for WPIW 2017!

IPOPI and the primary immunodeficiency (PID) community will be holding a dedicated week to raising awareness about PIDs! World Primary Immunodeficiencies Week (WPIW) will be observed from April 22 to 29 and all eyes and ears will be on our joint efforts to make PIDs better known and better understood.
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IPOPI attends Rare Disease Day Celebrations in Brussels

As in the past, IPOPI was pleased to actively take part in the Rare Diseases events organised in Brussels which included the Eurordis Black Pearl Gala Dinner and the 2nd Multi-Stakeholder Symposium on Improving Patients’ Access for Rare Diseases.
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IPOPI's Global Immunoglobulin Products List updated

IPOPI is pleased to announce that its Global Immunoglobulin Products List has recently been updated. Two countries were for the first included, Ivory Coast and Togo, showing that immunoglobulin (IG) replacement therapies are reaching new patients every year.
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IPOPI family growing – the Philippines and Paraguay

We are delighted to announce that two new patient organisations, from the Philippines and Paraguay, have recently been accepted as IPOPI associate member organisations this year.
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IPOPI attends PLUS 2017 Consensus Conference

Blood legislation potential review. IPOPI participated in the PLUS Consensus Conference in January 2017 in Estoril (Portugal).
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IPOPI attends IPFA meeting in Indonesia

The IPFA 2nd Asia Workshop on Plasma Quality and Supply 2017 took place in Yogjakarta on 2-3 March 2017 and covered very important topics for policy makers, pharmaceutical industry representatives and patients from several countries in the Asia Pacific region.
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Remembering John W. Walsh

John W. Walsh, whose vision of a research foundation and a patient services organisation for people with Alpha–1 Antitrypsin Deficiency led to today’s highly successful and influential Alpha–1 Foundation and AlphaNet, passed away surrounded by his loving family on Tuesday, March 7.
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IPIC2017 - Abstract submission open

The IPIC2017 Scientific Committee invites you to submit an abstract for poster presentation for original contributions to the field of clinical care of Primary Immunodeficiencies (PIDs).
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Pointing out solutions to improve access to care

The International Plasma Protein Congress (IPPC) took place in the city of Prague, Czech Republic, on March 14-15 and aimed at pointing solutions to improve access to care.
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Medical congress and patients meeting in Iran

The Immunology, Asthma and Allergy Research Institute (IAARI) from Iran held its 3rd international congress at Imam Khomeini Hospital, in Tehran, from February 15-17. The event promoted multidisciplinary approach and gathered 14 international experts.
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African PID patients meeting at ASID congress

IPOPI will be hosting a primary immunodeficiencies (PIDs) patients’ meeting in Zambia on April 2, to discuss regional priorities in the African continent!
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IPOPI in kick-off meeting of European Reference Network for PIDs

IPOPI participated in the conference and kick-off meeting of the European Reference Networks organised by the European Commission on March 9-10 in Vilnius, Lithuania.
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European Medicines Agency - EMA

Personalised medicine workshop Joint patients and healthcare professionals meeting. The European Medicines Agency (EMA) organised a workshop on “personalised medicine” for patients and healthcare professionals on March 14, 2017.
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Gene therapy for PIDs leads to successful treatment of other rare conditions

Sickle cell disease
Prof Marina Cavazana began working with biotherapies in 1990 together with Profs Alain Fischer and Salima Hacein-Bey-Abina (Necker Hospital - Imagine Institute, Paris).

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NMO focus

Argentina - overcoming distances

In 2002 Dr Matías Oleastro took the initiative of bringing together adult patients and parents of children with primary immunodeficiencies (PIDs) from different health centers with the intention of forming an NMO.
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Around the world
US - IDF Hosts National Conference
Malaysia - MyPOPI organises First PID Family Day
Spain – Discussing SCID NBS in the Parliament Health Commission
Argentina – Rare diseases day celebration
Morocco - PID Classification mobile app
France - IRIS survey on PID and replacement therapy
Germany – ‘Donate plasma – save lives’ campaign
UK – PID UK marks Rare Diseases Day with dedicated newsletter


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