in this edition
 
From the Chairperson's desk
IPOPI News:
IPOPI Biennial Meeting >
IPOPI Patient Needs and Outlooks Study Publication >
World PI Week Outcomes >
IPOPI attends IPFA meeting >
IPIC 2015 >
IPOPI Eastern European Regional Meeting >
Eurordis Rare Disease Congress in Berlin >
Big welcome to ThaiPOPI >
Leaflets on Primary Immunodeficiencies translated into Romanian >
IPOPI attends EHC Meeting in Langen >
Health First Europe brings stakeholders together in Brussels >
PLUS advocating for rare plasma related disorders patients >
European Medicines Agency update >
Interview with Beatriz Carvalho >
Around the world:
A Great Start for MyPOPI - Malaysia >
IDFA celebrates WPIW with a 'Touch of Elegance' >
Meeting of Nordic PID Patient Organisations >
World PI Week in two Portuguese cities >
A concert in celebration of IRIS' 15th Anniversary >
World PI Week events in India >
First WPIW for the Association of Immunodeficiency Patients of Québec >
PID Medical Training event in Spain >
Argentina WPIW Family Day >
World PI Week in Sweden >
Awareness efforts in Iran during WPIW >
From the Chairperson's desk...
 
Dear Friends,

Whilst the Football's World Cup has brought excitement to most parts of the world with fans fervently supporting their national teams, the IPOPI team has scored on several fronts!
Firstly I am delighted to announce that after Malaysia in February, Thailand has now joined the IPOPI growing family. ThaiPOPI was recently launched and accepted as an associate IPOPI member. Its birth is a direct outcome of the successful meeting IPOPI organised in Bangkok during October 2013 in collaboration with the Allergy, Asthma and Immunology Association of Thailand (AAIAT) and the Asia Pacific Association of Paediatric Allergy, Respirology and Immunology (APAPARI). This new member consolidates IPOPI's Bob LeBien Asian development programme launched last year and paves the way forward for additional new NMO's in the region.

IPOPI Biennial Meeting
 
IPOPI will organise its XIIIth Biennial Meeting in collaboration with ESID and INGID later this year from the 28th of October to the 1st of November in the beautiful city of Prague in Czech Republic. We are already looking forward to meeting with all our members and most especially to welcome in person our most recent members: Bosnia & Herzegovina, Bulgaria, Egypt, Malaysia, Peru, Slovenia, Thailand, Uganda and UK.

IPOPI Patient Needs and Outlooks Study
 
IPOPI recently published its survey manuscript looking at Improving current immunoglobulin therapy for patients with primary immunodeficiency: quality of life and views on treatment. The purpose of this study was to gain an understanding of how existing PID therapies affect patient lives and to identify desired improvements to immunoglobulin treatments.

World PI Week Outcomes
 
The fourth edition of the World PI Week was held on 22 - 29 April 2014. This year's edition continued with the work initiated in last year's campaign and focused on enhancing testing, diagnosis and treatment of PIDs.

IPOPI attends IPFA meeting
 
The International Plasma Fractionation Association (IPFA) and the Paul-Ehrlich Institute held their 21st Workshop on "Surveillance and Screening of Blood Borne Pathogens" in Rome on 21-22 May 2014. The event was hosted this year by the "Centro Nazionale Sangue, Istituto Superiore di Sanita (ISS)" and "the Italian Society for Transfusion Medicine and Immunohaematology (SIMTI)".

IPIC 2015
 
5 to 6 November in Budapest, Hungary IPOPI will host the second edition of the International Primary Immunodeficiencies Congress (IPIC) in the beautiful city of Budapest, Hungary, 5 to 6 of November 2015.

IPOPI Eastern European Regional Meeting
 
Serbian and Bosnia-Herzegovina representatives at IPOPI Eastern European Regional Meeting
IPOPI Eastern European Regional Meeting took place on Saturday 15th March 2014 in Antalya (Turkey), following the 100th J Project Anniversary meeting. This successful event was attended by representatives from 10 National Member Organisations of the region, physicians, industry representatives and IPOPI to explore the adaptation of the Antalya Consensus document to each country situation.

Eurordis Rare Disease Congress in Berlin
 
Sven Frandrup at the Rare Diseases Congress in Berlin
IPOPI attended the European Conference on Rare Diseases & Orphan Products, organised by Eurordis in Berlin (Germany) from 8 to 10 May 2014. This Conference is a major event in the area of rare diseases in Europe and congregated more than 800 delegates from patient groups, healthcare professionals, researchers, policy makers, regulators and industry.

Big welcome to ThaiPOPI
 
ThaiPOPI is the second South East Asian National Member Organisation (NMO) to join the IPOPI family since the beginning of the year after the recently formed Malaysian group MyPOPI, further helping to increase PID awareness in Asia.

Leaflets on Primary Immunodeficiencies translated into Romanian
 
ARPID, IPOPI's Romanian NMO, with the collaboration of Dr Artemiza Baldea translated into Romanian all six issues of the IPOPI Primary Immunodeficiencies series of booklets which had been produced with the support of the Immune Deficiency Foundation (IDF).

IPOPI attends EHC Meeting in Langen
 
On the occasion of World Haemophilia Day, IPOPI's Executive Director, Johan Prevot, was pleased to attend the event organised by the European Haemophilia Consortium (EHC) in Langen, Germany on April 16, 2014. The event brought back memories of the EU Consensus conference which IPOPI had organized in the very same meeting room, in 2006.

Health First Europe brings stakeholders together in Brussels
 
IPOPI was invited to attend the Annual General Assembly and 10th anniversary meeting of Health First Europe (HFE), an alliance of patients, healthcare workers, academics and healthcare experts and the medical technology industry. HFE's mission is to ensure that equitable access to modern, innovative and reliable medical technology and healthcare is regarded as a vital investment in the future of Europe.

PLUS advocating for rare plasma related disorders patients
 
Discussing the risk-based decision making framework
PLUS, the Platform of Plasma Protein Users, of which IPOPI is one of the founding organisations has been very active in recent months. A successful joint meeting was organised in collaboration with the Alliance of Blood Operators (ABO) in London on 10 June 2014. The meeting was held as part of the ABO risk-based decision making (RBDM) framework projects which seeks to provide an overall risk framework with health economics and outcomes tools specially designed for blood safety, stakeholder engagement guidelines and a web portal.

European Medicines Agency update
 
Jose Drabwell, IPOPI Chairperson, attended a meeting of the Patients' and Consumers' Organisations Working Party of the European Medicines Agency (EMA) in London, on 3rd June 2014. IPOPI is a member of this working party where the European medicines regulator discusses with patients and consumers representatives issues related to pharmacovigilance, falsified medicines or the transparency of data from clinical trials. Patients, as the end-users of the medicines, are considered as key stakeholders by this European Agency, in charge of evaluating medicines in the European Union. This forum is a great opportunity for IPOPI to voice the perspective of PID patients.

Interview with Beatriz Carvalho
 
Recognising PIDs across the range of clinical practice
Dr Beatriz Carvalho, one of the leading immunologists in Brazil, has recently published an article that helps physicians from different medical specialties to look for specific symptoms and diagnose PIDs more easily. IPOPI held an interview with her, exploring the reason behind the article and why she has been passionate about PIDs since the very start of her career.

A Great Start for MyPOPI - Malaysia
 
Bruce Lim, father of a PID patient and Prof Lokman Noh at Capital TV
The Malaysian Patients Organisation of Primary Immunodeficiency, or MyPOPI for short, marked the 4th edition of World Primary Immunodeficiencies Week (WPIW) with a series of media interactions which aimed at improving awareness of PID in Malaysia. For MyPOPI, this is the inaugural WPIW in Malaysia. In conjunction with WPIW, 4 impactful media outreach events were successfully conducted with the aim to create greater awareness for PIDs among Malaysians and to bring to the attention of medical practitioners and policy makers that PID is no longer a rare disease.

IDFA celebrates WPIW with a 'Touch of Elegance'
 
IDFA staff at the Gala
To celebrate World PI Week, IDFA (Immune Deficiencies Foundation Australia) held a Fundraising Gala Ball and also a major nationwide mail out to healthcare professionals.

Meeting of Nordic PID Patient Organisations
 
Young adults dipping their toes in hot water from a geothermic well
IPOPI was pleased to support this important regional event which brought together around 60 PID patients and their relatives from Iceland, Norway, Finland, Sweden and Denmark met in Iceland to learn the latest news about PIDs, exchange experiences and enjoy the Icelandic hospitality.


World PI Week in two Portuguese cities
 
Happy faces in the Walk for Health
APDIP organised several activities in two wonderful Portuguese cities, Coimbra and Lisbon, within the World Primary Immunodeficiencies Week 2014. IPOPI was delighted to actively take part in the Lisbon event.

A concert in celebration of IRIS' 15th Anniversary
 
Philippe Jaroussky, french counter-tenor and IRIS supporter performing at the anniversary concert
On the occasion of its 15 year anniversary, the French association IRIS organised an outstanding concert in the church Saint-Pierre in Neuilly (close to Paris) in partnership with the choir school of the Hauts-de-Seine department and with the enthusiastic participation of Philippe Jaroussky, the famous counter-tenor and IRIS's patron.

World PI Week events in India
 
Silent March in New Delhi
The Indian Patients Society for Primary Immunodeficiency (IPSPI) organised several events to observe WPIW. A Silent March with many participants and WPIW related signs obtained media coverage. On the same day IPSPI had a program at A.C.Hall, Parliament Street, Connaught Place, New Delhi, promoting doctor/patient interaction.


First WPIW for the Association of Immunodeficiency Patients of Quebec
 
The Association des Patients Immunodéficients du Québec (APIQ), the Quebequian chapter of the Canadian Immunodeficiencies Patient Organisation (CIPO) organised on April 26th their first conference as part of the World Primary Immunodeficiencies Week. The conference under the title 'My Life is Better' was held at the Justine-Lacoste-Beaubien Amphitheater at CHU Ste. Justine but was also broadcasted via videoconference in Quebec City, to allow patients and health professionals from other regions to take part in this free educational day.

PID Medical Training event in Spain
 
Carlos Jimenez, AEDIP's president, addressing the audience
The Spanish Patient Association for PIDs (Asociación Espanola de Deficits Inmunitários Primários-AEDIP) observed Word PI Week with a medical event in the city of Sevilla, in the Autonomous Community of Andalusia, the most populated Spanish Community however with below average number of PID diagnosis. This event follows the advocacy efforts made by AEDIP in this Community.

Argentina WPIW Family Day
 
Sharing experiencies and learning from each other
In the spirit of World PI Week, and as part of this initiative, the Argentine Association for Primary Immunodeficiencies (AAPIDP in Spanish) organised its Family Day 2014. The event's aim was to gather members of the PID community (patients, family, friends and health professionals) sharing a whole day with each other in a nice and friendly environment.

World PI Week in Sweden
 
For this year's edition of World PI Week, the campaign of the Swedish patient organization, PIO, focused on newborn screening. A three year study is currently ongoing in Sweden in the Stockholm area to test a new method to use the blood sample from the Guthrie cards to also find children with severe primary immunodeficiencies.

Awareness efforts in Iran during WPIW
 
Participants getting ready for the Walk
The Iranian IPOPI National Member Organisation and the Iranian Research Center for Immunodeficiencies (RCID) carried out different activities to commemorate the WPIW for the fourth consecutive year on 22-29 April 2014 at the Children's Medical Center Hospital, Tehran.

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