Spring 2012
in this edition
From the chairperson's desk
IPOPI participates in 3rd PLUS Dublin Consensus Meeting >
ASID IPOPI Meeting >
IPOPI SCID Newborn Screening EU Update >
IPOPI - Follow up campaign on HTAs and PID >
2nd World Primary Immunodeficiencies (PI) Week >
Latest developments from the European Medicines Agency >
IPOPI participates in the International Plasma Protein Congress, Madrid >
Dr Teresa Espanol is honoured with Hilfenhaus Award >
IPOPI attends PLUS membership meeting in Madrid >
IPOPI's growing NMO family >
IPOPI published new set of Patient Information Leaflets >
IPOPI Biennial Meeting Florence >
E-News opinion survey >
Around the world:
In Tune with Your Immune System-Battle of the Bands Video >
IDF eHealthRecord >
IPOPI attends First Rare Diseases Gala Dinner in Brussels >
News from France... >
PIO's research grant 2011 >
Argentina - World Rare Diseases Day, 2012 >
From the Chairperson's desk...
Dear Friends, dear Colleagues,

Welcome to the first 2012 issue of e-news! One of our resolutions for this year is to make sure IPOPI builds on the many successful PID campaigns, projects and events which took place around the world in 2011, particularly as 2012 marks IPOPI's 20th anniversary. These were the results of the hard work not only of IPOPI but of all PID stakeholders - patients, doctors, nurses and industry- working hand in hand on so many projects.

IPOPI participates in 3rd PLUS Dublin Consensus Meeting
As a member of PLUS Executive Committee, IPOPI participated in the 3rd annual PLUS Dublin Consensus Meeting held on 12-13 January 2012 in the beautiful setting of Dunboyne Castle in Ireland.

The two first PLUS meetings in 2010 and 2011 had brought key stakeholder organisations in the field together to discuss for the first time issues pertaining to the collection and provision of blood components and plasma derived medicinal products. The key outcome of the meetings had been the production of two landmark consensus statements on this important issue.

March 8th-11th 2012
Hammamet, TUNISIA

How Africa moves forwards with ASID

The African Society for Immunodeficiencies (ASID) held its 2nd Congress and 5th African Primary Immunodeficiencies School in Tunisia (Hammamet). A total of 14 African countries took part in the event together with numerous experts coming from all over the world. IPOPI was proud and happy to participate in this unique and very valuable meeting.

IPOPI SCID Newborn Screening EU Update
Since June 2011 IPOPI has been actively campaigning for the implementation of SCID Newborn Screening (NBS) in the European Union. As part of its partnership with Member of the European Parliament (MEP) Glenis Willmott, and further to IPOPI's PID Forum on SCID NBS at the European Parliament and a subsequent meeting with patients and key opinion leaders in the UK, IPOPI met in January 2012 with Mrs Willmott and Mr Stefan Schreck to further discuss how the EU institutions can help in accelerating the implementation of SCID NBS. The meeting was an excellent opportunity to get a better understanding of the Commission's workplan in the area of newborn screening and re-affirmed the need for advocating on behalf of patients at EU level.

IPOPI - Follow up campaign on HTAs and PID
Further to IPOPI's PID Forum at the European Parliament on Health Technology Assessments (HTAs) and Primary Immunodeficiencies in December 2011, and as an outcome to the meeting, IPOPI recently released the following finalised set of EU recommendations on HTAs.

2nd World Primary Immunodeficiencies (PI) Week
On April 22-29, the second World PI Week (WPIW) will provide a unique global momentum for all stakeholders to further raise the recognition and diagnosis of primary immunodeficiencies as an increasingly important group of diseases. This year's theme is "Access to appropriate treatment".

Latest developments from the European Medicines Agency
As an active partner organisation at the European Medicine Agency and thanks to Jose Drabwell's tireless work, IPOPI actively collaborates on various fronts with the agency. Here's a short report on the latest developments....

IPOPI participates in the International Plasma Protein Congress, Madrid
This year the International Plasma Protein Congress (IPPC) was held in the beautiful city of Madrid on 13-14 March. The conference is organised every year by the Plasma Protein Therapeutics Association (PPTA) and brings the plasma protein therapeutics stakeholder community together to discuss latest developments around access to treatment, policies, clinical and regulatory issues.

Dr Teresa Espanol is honoured with Hilfenhaus Award
It was quite fitting that it was in Madrid the capital city of her home country that Dr Teresa Espanol was recently honoured with the prestigious PPTA's Hilfenhaus Award which is presented every year during the International Plasma Protein Congress (IPPC) to a person who has made an outstanding contribution to patient access to safe plasma protein therapies.

IPOPI attends PLUS membership meeting in Madrid
The annual PLUS (Platform of Plasma Protein Users) membership meeting was held on Monday 12 March 2012 in Madrid. Every year, the meeting provides an excellent opportunity for all member organisations of PLUS to exchange information, share viewpoints on common issues and objectives, review the latest PLUS key achievements and set forth the future activities for this increasingly successful multi-patient group platform.

IPOPI's growing NMO family
Over the last two years IPOPI has been extremely pleased to be able to welcome new national patient organisations within its membership thereby significantly increasing its network of National Member Organisations. The latest to join the IPOPI family is the Russian Association for Primary Immunodeficient Patients which was granted associate member status by the IPOPI's Board of Directors in January 2012.

IPOPI published new set of Patient Information Leaflets
In January 2012, IPOPI was pleased to release three new patient information leaflets.

IPOPI Biennial Meeting Florence
On 3-6 October 2012, IPOPI will organise its XIIth Biennial Meeting in collaboration with the XVth ESID and Xth INGID Biennial Meetings in beautiful Florence, Italy.

E-News opinion survey
IPOPI is looking forward to have your opinion on our newsletter. This will help us improve the way we reach the PID stakeholders community and better identify our readership.

If you can give us another minute of your time please click on the link below and answer the five questions we have for you. Link

In Tune with Your Immune System-Battle of the Bands Video
The Immune Deficiency Foundation is proud to announce its new video created especially for teens to help explain how the immune system works. The video compares the human immune system to a rock band - it needs all the parts functioning to make great music! "The Immunos" are the good band with musicians representing T cells, B cells, Natural Killer Cells, Phagocytes and Complement Proteins. A battle of the bands occurs when the bad band--featuring Bacteria, Viruses and Fungi-- arrives and tries to prove who the best band is.

IDF eHealthRecord
The IDF eHealthRecord is a one of a kind electronic personal health record developed by the Immune Deficiency Foundation for individuals and families living with primary immunodeficiency diseases. It is designed to help them take control of their health information and make life easier. It can track symptoms, treatments, and check progress, even schedule and review events in the calendar section. Users can organize the health profiles for patients and all family members all in one place and be ready if there is an emergency. Security measures keep records safe, secure, and ready for when they are needed. Moreover, there is no cost to patients or family members.

IPOPI attends First Rare Diseases Gala Dinner in Brussels
February 29th marked the celebration of 5th Rare Diseases Day. Launched in 2008 and held every year on the last day of February ('a rare day for rare people'), the event has grown rapidly and successfully over the years.

News from France...
1) IRIS PID National Day: What a wonderful day!

On February 4th , IRIS organised the first ever National PID Day. More than 300 attendees came from numerous regions, together with physicians specialised in PID, pharmacists, health authorities, nurses, social workers, pharmaceutical companies who strongly supported this event ...

PIO's research grant 2011
Each year, the Swedish patient organization for primary immunodeficiency, PIO, supports research regarding primary immodeficiency with grants from PIO's research fund. In 2011, Ning Wang, Ph.D. student at Karolinska Institutet in Stockholm received the annual research grant for her research on selective IgA deficiency in autoimmune diseases. Here is her description of her current research:

Argentina - World Rare Diseases Day, 2012
On February 29 of 2012, the World Rare Disease Day took place at San Martín Square on the city of Buenos Aires, Argentina.

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