in this edition
From the Chairperson's desk
Tribute to Mike LeBien >
Publication of PIDs - Principles of Care >
IPOPI 5th PID Forum at the European Parliament >
IPOPI XIIIth Biennial meeting in Prague >
Bob LeBien and Luciano Vassalli Awards >
IPOPI supports PID Political Event in Brazil >
IPIC 2015 - Confirmed speakers >
IPOPI attends 5th World Orphan Drugs Congress >
Health First Europe 10th Anniversary >
EMA Update >
EU Policy Update >
IPOPI patient information leaflets in Polish >
Around the world:
Stephan’s bone marrow transplant journey - A Parent’s Perspective >
Fresh start for the Belgian NMO! >
DiGeorge Syndrome Day observed in Brazil >
IDF (US) launches Electronic Personal Health Record – ePHR >
Colombia - 6th Annual FIP Gala >
NMO focus:
Primär immunbristorganisationen, PIO >
From the Chairperson's desk...
Dear Friends,

It is hard to believe 2014 is already coming to an end! This year seems to have just gone in a flash. No doubt the numerous activities that IPOPI has been engaged in has contributed to this impression. 2014 has been marked by many different new projects, advocacy and awareness activities. I want to start this editorial by highlighting specifically IPOPI’s 2014 efforts in the South East Asian region. Thanks to the support of Bob LeBien, IPOPI’s founding father, new NMOs have been launched in Thailand, Malaysia, Hong Kong and we are in the process of doing so in Singapore. IPOPI has planned many other activities in the region in 2015 including close collaborative efforts with the new network of South East Asian doctors which IPOPI has fervently supported in order to raise awareness about PIDs and launch new patient organisations. Sadly however the end of this year was also marked by the tragic loss of Mike LeBien, the son of Bob and Sara LeBien who have so eagerly supported our efforts in South East Asia. We have dedicated a tribute article to Mike in this edition of eNews and I want to reiterate our most sincere condolences to the entire LeBien family in these very difficult moments.

Tribute to Mike LeBien
The whole IPOPI family was deeply saddened to learn that Mike LeBien, the son of Robert and Sara LeBien, passed away recently.  Mike’s father, Bob, is the founding father of IPOPI and served as chairman for a number of years. Mike who lived with a primary immunodeficiency (CVID) was the reason behind Bob and Sara’s decision to advocate on behalf of PID patients worldwide. Bob said, "Mike was forced to live in the slow lane of life causing him to have a unique clarity of its details. He found beauty in the routine, the everyday, the taken for granted. Mike's life was best summed up by his wife Tina, when she said,'Mike taught me what love is.' "

Publication of PIDs - Principles of Care
Over the last two years, IPOPI combined its efforts with a worldwide multi-disciplinary team of specialists to develop the 'Primary Immunodeficiencies Principles of Care'. The paper outlines the key necessary elements and policies that should be in place to provide a "gold standard" framework of diagnosis and care for primary immunodeficiencies.

IPOPI 5th PID Forum at the European Parliament
IPOPI recently held its 5th PID Forum at the European Parliament in Brussels (Belgium), which was co-chaired by the Members of the European Parliament (MEPs) Dr Cristian Busoi and Dr Boreslaw Piecha. This edition focused on the need for a comprehensive framework for care and policy for PIDs.

IPOPI XIIIth Biennial meeting in Prague
IPOPI held its Biennial meeting in Prague, Czech republic, from 28 October to 1 November 2014, in conjunction with the ESID and INGID Congresses. This Biennial’s edition featured many stimulating interactive workshops tailored for our patient group representatives.  Strategies for fundraising, importance of data collection and maximizing collaboration between MNOs and national organisations for rare diseases were some of the favorite topics approached in this edition for the first time.

Bob LeBien and Luciano Vassalli Awards
Every two years during the Biennial Meeting IPOPI recognises one adult and one young adult (under 25 years old) who have contributed greatly to the world of PIDs. This year the Bob LeBien and the Luciano Vassalli Award Ceremonies took place during the traditional IPOPI NMO Dinner held at the Zlata Praha Restaurant in Prague, Czech Republic on the 30th of October.

IPOPI supports PID Political Event in Brazil
On 11th November 2014, the Commission on Social Security and Family of the Brazilian Federal Parliament held a session on PIDs that was chaired by Congressman Saraiva Felipe.  The meeting, supported by IPOPI, ABRI and ANPIC, aimed at promoting knowledge about PIDs amongst Brazilian policy makers to ensure an access to early diagnosis, appropriate treatment and an update of the Ministry of Health guidelines to acquire therapies for PIDs.

IPIC 2015 - Confirmed speakers
The second edition of IPOPI’s congress IPIC (International Primary Immunodeficiencies Congress) will be held in the beautiful city of Budapest, Hungary, 7 to 8 of November 2015 building on the outcomes of IPIC2013 and on the good feedback received from the first edition. The Organising and Scientific Committees of the congress have been working on the two-day programme, which looks very promising with many prominent speakers already confirmed.

IPOPI attends 5th World Orphan Drugs Congress
Johan Prevot, Executive Director, and Leire Solis, Health Policy Manager at the congress
The 5th World Orphan Drugs Congress gathered patient representatives, reimbursement authorities, regulators and industry together in Brussels (Belgium), from 12 to 14 November 2014 to discuss how to ensure that patients have access to innovative and effective treatments for rare diseases.

Health First Europe 10th Anniversary
IPOPI participated in Health First Europe 10th Anniversary on 12 November 2014 at the European Parliament in Brussels. This Anniversary was marked by the launch of a new European Parliament Interest Group on Innovation in Health and Social Care. IPOPI was represented by its Executive Director and Health Policy Manager, Johan Prévot and Leire Solís, in a meeting chaired by the Member of the European Parliament (MEP) Marial Harkinn.

EMA Update
In November 2013 a five year ADVANCE (accelerated development of vaccine benefit-risk collaboration in Europe project) project was launched to deliver a blueprint for a pan-European framework, monitoring the benefits and risks of vaccines throughout their lifecycle and for communication these benefits and risks.  This year workshop on the topic was held this past November.

EU Policy Update
The past 6 months have witnessed important changes in the European institutions: European Parliament elections in June 2014 and the new Commission taking office in November 2014. The new President of the Commission, Jean-Claude Junker, in his proposal for the new organisation of the Commission and its directorates (equivalent of Ministries or Departments in a national government) considered that

IPOPI patient information leaflets in Polish
IPOPI leaflets are now available in one more language - Polish.

Immunoprotect recently translated into Polish the last published series of IPOPI leaflets. PIDs: Autoimmunity and Autoinflamation, PIDs and plasma-derived therapies, Vaccines and PIDs are now available for polish speakers here.

Stephan’s bone marrow transplant journey - A Parent’s Perspective
Some might say that parenthood is the hardest job in the world, and I could not agree more. Parenthood is not a job that you can resign from, go on leave for a holiday, or excuse yourself from when you are sick; but when sickness strikes a young child, your child, it can make the normal routine of parenting seem like a walk in the park.

Fresh start for the Belgian NMO!
After a good start and a very successful Family Day in 2013, BOPPI's activities slowed down somewhat, partly because of several members leaving the Board. When Alain Delfante, one of the founding members, called out for help among newly recruited members, a number of enthusiastic volunteers stepped forward and a new Board was created in April 2014.

DiGeorge Syndrome Day observed in Brazil
Brazil recently observed the DiGeorge Syndrome Day (DGS) in the city of São Paulo on the 22nd of November in an attempt to increase medical awareness of the condition.

IDF (US) launches Electronic Personal Health Record – ePHR
Improving Health and Powering Research

The Immune Deficiency Foundation (IDF) is revolutionising how patients with primary immunodeficiency diseases (PIDs) can improve their health and help power research with the new IDF ePHR, the electronic personal health record specifically designed for the PID community, and PI CONNECT, the IDF Patient-Powered Research Network.

Colombia - 6th Annual FIP Gala
Each year Fundacion FIP (Colombian NMO) organises a Gala to celebrate life and to thank all the friends and contributors to all the Foundation’s projects. On the 27th of November FIP’s 6th Gala took place in the Art Gallery Duque Arango, in Medellín, Colombia

Primär immunbristorganisationen, PIO
“Every person with a PID and their families should have the possibility to live a good life”

The Swedish patient organisation for primary immunodeficiency, PIO, was founded in 1978 as the first organisation in the world for people with primary immunodeficiency and their families. PIO was founded by Maj-Lis Hellström after she and her husband had lost their three children with severe combined immunodeficiency. The treatment needed to save the life of the siblings was not available in the 1970’s. Maj-Lis saw the lack of information about primary immunodeficiency for patients and laymen, and the lack of knowledge among doctors and in health care, so she decided to start the organisation to change this and to provide, and receive, support to and from other affected families.

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