e-News Spring 2016
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From the Chairperson's desk

After the busy days of December last year, a short but welcome rest was enjoyed by us all, but not for long because IPOPI has a full agenda for 2016. One of the highlights of this year is our XIVth Biennial meeting in Barcelona on 21-24 September where we will be meeting with numerous delegates of our member organisations, alongside our partner organisations ESID and INGID.

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IPOPI News

Biennial meeting this September

IPOPI will organise its XIVth Biennial Meeting in collaboration with ESID and INGID later this year from the 21st to the 24th of September in the fantastic city of Barcelona, Spain. 
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World Primary Immunodeficiencies Week is almost here!

With World Primary Immunodeficiencies Week 2016 just around the corner, IPOPI is looking forward to collaborating with its member organisations to make it a great success.
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IPOPI attends Rare Diseases Workshop in Brussels

IPOPI attended the Eurordis Multi-Stakeholder Symposium on improving access to rare diseases therapies which was held in Brussels on 21-24 February 2016.

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Visit at Chang Gung Memorial Hospital in Linkuo, Taiwan

It was with great pleasure that IPOPI’s Executive Director, Johan Prevot visited Chang Gung Memorial Hospital in Linkuo, Taiwan where he met with Professor Wen-I Lee, Attending Physician and...
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IPOPI attends GPIP VII meeting

IPOPI was delighted to participate in the Portuguese physicians group for primary immunodeficiencies (GPIP)’s 7th meeting on February 26th in Porto. The meeting was attended by 120 participants and focused...
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PLUS 2016 stakeholder consensus meeting held in Estoril

The PLUS 2016 stakeholder consensus meeting was held on 14-15 January in Estoril, Portugal. The event was attended by numerous patient organisations including IPOPI, EHC, WFH....
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Sven Fandrup awarded in Rare Diseases Day

Sven Fandrup was recently recognised for his work and commitment towards the Rare Disases Community together with Dr Susanne Blichfeldt. The prize was 5000 DKK (670 Euros) and....
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IPIC2017 – Save the date!
8 – 10 Nov 2017, Dubai

IPOPI will host the third edition of the International Primary Immunodeficiencies Congress (IPIC2017) in the vibrant city of Dubai on 8-10 November 2017!

IPOPITV – Brand new online tool!

IPOPI recently launched a brand new online tool for the PID community, the IPOPITV! You can now find all IPOPI’s video content including patient testimonials, physician interviews...
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IPFA Asia Pacific Workshop on Plasma Quality and Supply

The International Plasma Fractionation Association (IPFA)’s Asia Pacific Workshop on Plasma Quality and Supply was held in Taipei, Taiwan on 8-9 March 2016.
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Three questions to Ségolène Aymé

Ségolène Aymé is a medical geneticist, founder of Orphanet. She has played an important role in the last years chairing the Topical Advisory Group on rare diseases at the World Health Organization, chairing the European Union...
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Launch of PID Burden of Treatment Study during WPIW

IPOPI has joined forces with the University of Sheffield in the UK to launch a new PID Burden of treatment Study. The first phase of the study will kick-off during World Primary...
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UK College fundraising for IPOPI

In March 2015 IPOPI received a message from Mrs. Patsy Brown to say that her daughter, Megan who is a student at Bishops Stortford College, had the opportunity to a charity as part of College’s fundraising programme.
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EMA update by Jose Drabwell

Session on communication and information on medicinesDifferent types of information prepared by the EMA which are a relevant resource for patients and healthcare professionals...
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Around the world
UK – XLA Art Exhibition in Edinburgh
Cyprus – Rare Diseases Day events
Slovakia – Raising PID awareness
France – IRIS programme for patient education
Morocco – Hajar in the 1st ARAPID Congress
Portugal – Launch of a PID patient book ‘Thoughts and Confidences’
Ukraine – Rare Diseases Day celebrations
Germany – New DSAI leaflets
Argentina – AAPIDP in Rare Diseases Day
Canada – Québec WPIW activities

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