IPOPI - Fall 2012 IPOPI - Fall 2012

Fall 2012

 
in this edition
 
From the Chairperson's desk
IPOPI News:
IPOPI NMO Advocacy and Media Training Workshop, Belgrade >
EU Study on Blood & Plasma Products >
PLUS Consensus Statement 2012 >
IPOPI attends European Haemophilia Consortium (EHC) Round Table >
IPOPI SCID Newborn Screening Advocacy Campaign >
IPOPI Patient information Leaflets now available in French >
IPOPI Review of Activities - 20th anniversary edition! >
Growing team - IPOPI Staff update >
First International Primary Immunodeficiencies Congress >
Join us in Florence >
Around the world:
German NMO launches newsletter >
IDF Releases New Guide for Nurses >
PPTA 20th anniversary >
5th regional meeting in Argentina >
Eurordis summer school >
From the Chairperson's desk...
 
Dear Friends, dear Colleagues,

I hope all of you have had a very nice summer (or winter!) with the opportunity to relax a little bit and enjoy time with your loved ones.

The summer months were filled with activities for the IPOPI team who were really busy working on the preparation of several projects and events some of which have now taken place. Of course our Biennial meeting with ESID and INGID is now approaching fast and we hope to see many of you in the beautiful city of Florence!

IPOPI NMO Advocacy and Media Training Workshop, Belgrade
 
The 2012 IPOPI Advocacy and Media Training Workshop was recently held in Belgrade, Serbia.

The workshop was attended by 17 participants including representatives from 6 IPOPI National Member Organisations (NMOs) from Hungary, Poland, Romania, Russia, Serbia and Turkey.

EU Study on Blood & Plasma Products
 
The European Commission recently informed key stakeholders in the blood and plasma products fields that they were launching a study on the landscape of blood and plasma and their derived products in Europe. As such Johan Prévot (IPOPI) and Brian O'Mahony (EHC) recently met with Creativ Ceuticals the specialised consultants who have been appointed by the commission to carry out the study in order to share the patients viewpoints on this important topic.

PLUS Consensus Statement 2012
 
Further to the PLUS consensus meeting held in Dublin earlier this year, PLUS has recently submitted the 2012 consensus statement that was produced as an outcome of the meeting to Vox Sanguinis for publication.

IPOPI attends European Haemophilia Consortium (EHC) Round Table
 
As part of its collaboration with the European Haemophilia Consortium (EHC), IPOPI was pleased to attend the EHC Roundtable on Clinical Trials at the European Parliament in Brussels on 19 June. The meeting was chaired by MEP Nessa Childers (Ireland, S&D) held in the context of the current revision of the Clinical Trials Directive and brought together various stakeholders from the haemophilia community but also interested stakeholders from other disciplines and fields with an interest in the topic.

IPOPI SCID Newborn Screening Advocacy Campaign
 
IPOPI has been actively working on its policy campaign over the past months advocating for the implementation of SCID newborn screening in the European Union Member States.

IPOPI Patient information Leaflets now available in French
 
The IPOPI patient information leaflets continue to reach more patients, families and schools worldwide.

IPOPI Review of Activities - 20th anniversary edition!
 
The IPOPI Review of Activities was recently published at the occasion of IPOPI's 20th anniversary.

Growing team - IPOPI Staff update
 
IPOPI was pleased to welcome a new member of staff as of August 2012. Sónia Pereira de Figueiredo joined the IPOPI team as Health Policy and NMO Programme Manager.

First International Primary Immunodeficiencies Congress
 
Focus on Clinical Care and Diagnosis

IPOPI will organize its first congress on the 7th and 8th of November 2013 in Estoril (Lisbon), Portugal.

Join us in Florence
 
IPOPI's XIIth Biennial Meeting

Just a couple of days away to IPOPI's XIIth Biennal Meeting in conjunction with the XVth ESID and Xth INGID Biennial Meetings in historical Florence.

German NMO launches newsletter
 
In May 2012 dsai published its first newsletter. The newsletter will be released 3 times per year and does not only contain medical issues on PID but also articles about dsai's latest events and actions.

IDF Releases New Guide for Nurses
 
The Immune Deficiency Foundation announces the release of the IDF Guide for Nurses Immunoglobulin Therapy for Primary Immunodeficiency Diseases - 3rd Edition. The guide, developed by IDF's Nurse Advisory Committee, is sure to be a great resource for all the nurses caring for our patients.

PPTA 20th anniversary
 
Washington - 20th June 2012.

Marcia Boyle and Jose Drabwell represented IPOPI at the 20th anniversary Gala night in Washington. This was an evening commemorating two decades of the plasma therapeutics industry.

5th regional meeting in Argentina
 
The 5th Regional Meeting of the Argentine Association for Primary Immunodeficiencies (AAPIDP) took place in Posadas, Misiones, Argentina on the 10th of August 2012.

Eurordis summer school
 
Thanks to being an IPOPI Board member I was accepted to attended Eurordis Summer School In Barcelona. It was a capacity building programme for patient representatives involved at the European level in the development, approval, information and access to orphan drugs, paediatric drugs and advanced therapies.

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Errata
From the Chairperson's desk
IPOPI News:
First International Primary Immunodeficiencies Congress to be held in Portugal>
IPOPI SCID Newborn Screening Campaign Update >
IPOPI takes Awareness Workshop Campaign to Brazil >
IPOPI Regional African Meeting in Sun City >
World Primary Immunodeficiencies Week marches on... >
IPOPI supports Patients Solidarity Day in Africa >
IFPA Workshop: 20 years anniversary in Helsinki >
Leaflets on Primary Immunodeficiencies translated into Arabic >
IPOPI attends Wildbad Kreuth Meeting >
IPOPI takes part in a Middle Eastern physicians' meeting >
IPOPI attends Eurordis Membership Meeting in Dubrovnic >
Around the world:
Belgium - WPIW Family Day >
India - World PI Week in two events >
Argentina - WPIW report >
Sweden - WPIW2013 activities >
Portugal - APDIP celebrates WPIW a Family get-together >
IPOPI welcomes Bosnia and Herzegovina, Slovenia and Peru as new Associate NMOs >
Germany - Over 1000 babies tested with Screen ID pilot project >
The Norwegian Immunodeficiency Association celebrated its 30st anniversary >
IDF Video Series for Nurses>
Marcia Boyle awarded with Patient Services, Inc.'s President Award >
Spain - AEDIP elected a new president >
Swedish PID Summer camp announcement >
The UCL Institute of Immunity and Transplantation >
Errata
 
Dear e-News reader, this is a resend of the original newsletter that was sent out last Friday. The previous issue unfortunately contained some formatting errors and a duplicated article which contained some textual differences. These errors have now been corrected. Our apologies for the inconvenience this may have caused and we hope you enjoy this issue of e-News.
From the Chairperson's desk...
 

Jose Drabwell IPOPI's Chairperson
Dear Friends,
I would like to start this edition of e-News with a few words about advocating for better access to diagnosis and care for PID patients in Africa. IPOPI recently held a very successful regional patient meeting in South Africa (see our report here) where the African Society for Immunodeficiencies (ASID) held its third successful meeting jointly with ALLSA and SATS. I was struck by the tremendous progress that has been made in the region and the many inspiring stories and exciting opportunities lying ahead including an African Registry for Immunodeficiencies, the first Patients Solidarity Day later this year, increased collaboration between countries and of course the launch of new PID patient organisations in the region. As a result of this stimulating meeting, IPOPI is currently in discussion with several countries including Uganda, Egypt, Senegal and Zambia among others. Once, again I would like to congratulate Dr Monika Esser, Professor Aziz Bousfiha and their ASID colleagues for their leadership in the region and their tremendous efforts to bring better care and earlier diagnosis for African PID patients.

First International Primary Immunodeficiencies Congress to be held in Portugal
 
On the 7th and 8th of November 2013, Portugal will host the First International Primary Immunodeficiencies Congress (IPIC). The congress is organised by the International Patient Organisation for Primary Immunodeficiencies (IPOPI) and it will be held the beautiful villa of Estoril (Greater Lisbon).

IPOPI SCID Newborn Screening Campaign Update
 
As a result of IPOPI's policy campaign advocating for the implementation of SCID newborn screening in the European Union Member States with the support of MEP Glenis Willmott (S&D, UK), a discussion on the need for Newborn Screening for Rare Diseases specifically addressing SCID was held for the very first time during the European Parliament's ENVI Committee meeting on 25 April 2013.

IPOPI takes Awareness Workshop Campaign to Brazil
 
Workshop attendees after the Workshop
IPOPI recently organised an Awareness Campaign Workshop for the first time in Latin America. The workshop was held in at the UNIFESP Hospital in Sao Paulo on 17 May with the collaboration of two patient groups, IPOPI's Brazilian NMO ABRI (Associação Brasileira de Imunodeficiência) and ANPIC (Associação Nacional dos Portadores de Imunodeficiencia Primária Congénita) as well as with the participation of key Brazilian medical stakeholders and a specialized public affairs agency for the meeting.

IPOPI Regional African Meeting in Sun City
 
Participants at the IPOPI Regional African Meeting
IPOPI held a fruitful and productive regional patients meeting during the ASID congress held in Sun City, South Africa from 5-9 June 2013.

World Primary Immunodeficiencies Week marches on...
 
The Third World Primary Immunodeficiencies Week (WPIW) was held on 22-29 April 2013 following two successful campaigns in 2011 and 2012. This year's campaign featured an array of new awareness raising tools and was marked by the successful use of social media in promoting the campaign and ensuring stakeholders cooperation. Twitter provided an excellent basis to drive an increasing number of petitions, event and story sharing whilst Facebook enabled stakeholders to link their associations and campaigns, share video's and visuals and interact on rare diseases related themes.

IPOPI supports Patients Solidarity Day in Africa
 
As a Patients Solidarity Partner Organisation, IPOPI fully supports this important day which will be held this year in Africa on 30 October and is being spearheaded by IAPO

IFPA Workshop: 20 years anniversary in Helsinki
 
The International Plasma Fractionation Association (IPFA) and the Paul-Ehrlich Institute held their 20th Workshop on "Surveillance and Screening of Blood Borne Pathogens" in collaboration with the Finnish Red Cross Blood Service in Helsinki, Finland, on 23-24 April 2013.

Leaflets on Primary Immunodeficiencies translated into Arabic
 
Hajar, IPOPI's Moroccan NMO, with the collaboration of Professor Shereen Reda from the Children's Hospital in Cairo, translated into Arabic five issues of the IPOPI primary Immunodeficiencies series of booklets which had been produced with the support of the Immune Deficiency Foundation (IDF).

IPOPI attends Wildbad Kreuth Meeting
 
Jose Drabwell represented IPOPI at the European Symposium on Optimal use of clotting factors and immunoglobulins organised by the European Directorate for the Quality of Medicines and Healthcare - EDQM...

IPOPI takes part in a Middle Eastern physicians' meeting
 
IPOPI had the great opportunity to present its activities and achievements at a meeting organised by Octapharma and dedicated to physicians, last May in Dubai, along with several attendees from Middle Eastern countries.

IPOPI attends Eurordis Membership Meeting in Dubrovnic
 
The EURORDIS Membership Meeting 2013 took place in Dubrovnik, a beautiful Croatian city on the Adriatic Sea cost, from May 30th to June 01st. The meeting comprised four parts:

Belgium - WPIW Family Day
 
With the support of Herman Van Rompuy, President of the EU Council
On the 20th of April the Belgian patient group (BOPPI) and the Belgian Immunology Doctors Group (BPIDG) jointly organised the first Family Day as part of their World Primary Immunodeficiencies Week (WPIW) activities. 300 people attended this milestone event which marked a turning point for the patient group, looking forward to formally involve more people in the Organisation. The Family Day took place in Domaine Hofstade - Zemst, Belgium, a sports and recreational park just outside Brussels and it had the support of Herman Van Rompuy, President of the European Council who opened the outdoors plenary session.

India - World PI Week in two events
 
Rubby Chawla, Founder and President of IPSPI presenting at the International CME programme
India - World PI Week in two events 22nd -29th April 2013 marks World PI Week and in India this was observed by conducting an International CME programme on PID at Kalinga Institute of Medical Sciences (KIMS), Bhubaneswar, Odisha.

Argentina - WPIW report
 
Argentina joined the efforts of numerous organisations around the World to raise awareness on PID. Different activities were carried out with health professionals and the general community such as schools and universities. We aimed at encouraging governments to take measurements to ensure that every patient, child or adult, has access to early diagnosis and appropriate treatment allowing them to lead a normal life.
On Friday, April 19th to start off our week we took part of an event organized by FADEPOF, the Argentine Federation for Rare Disorders where our local NMO held an athenaeum at the University of Medicine conducted by Dr. Oleastro about PIDs. The main objective was to inform medical auditors about not only the disease but also treatment, medication and difficulties faced by patients.

Sweden - WPIW2013 activities
 
PIO celebrating WPW 2013
In preparation of World PI Week 2013, the Swedish patient organisation for primary immunodeficiencies, PIO, joined forces with the organisations for Swedish doctors' and nurses' working with patients with primary immunodeficiencies and with the industry. All three medical companies supplying immunoglobulin products to the Swedish market as well as two companies working in the field of medical equipment and in particular needles and pumps for subcutaneous immunoglobulin treatment were involved.

Portugal - APDIP celebrates WPIW a Family get-together
 
From left to right: Pres Maria João Mousinho, Nurse Catarina Marques, Dr Ângela Afonso from Biobanco and Prof Salomé de Almeida
The Portuguese association of primary immunodeficiencies (APDIP) organized, on 18th May, the "Second Meeting of Families with PID", in Lisbon. Patients and their families but also physicians and nurses took part in the meeting sharing their experiences and expertise.

IPOPI welcomes Bosnia and Herzegoniva, Slovenia and Peru as new Associate NMOs
 
The IPOPI family keeps growing: three new associate National Member Organisations (NMOs) have joined in the past few months. Slovenia (Slovenian Society for immune disorders) and Peru (Asociacion Peruana de Ayuda al Inmunodeficiente Primario) both had their PID patient groups implemented in 2011 and Bosnia and Herzegovina (Udruzenje POPID) just last year. They are all committed to providing help and support to PID patients in their respective countries and can also count on IPOPI for their further action.

Germany - Over 1000 babies tested with Screen ID pilot project
 
The German patient organisation dsai has been working for people with PID for 22 years now. Together with the PID center IDCL at Klinikum St. Georg in Leipzig and TRM Leipzig dsai arranged a press conference for kids and adolescents: "Newborn Screening saves lives: Klinikum St. Georg in Leipzig started pilot project for early diagnosis of Primary Immunodeficiencies". The conference, that was mentored by Christine Clauβ, a German minister of state, aimed at creating public awareness.

The Norwegian Immunodeficiency Association celebrated its 30st anniversary
 
Christoffer Jacob Øimoen, a trustee of the Norwegian organisation
On Saturday April the 12th 2013, 50 participants from the Norwegian Immunodeficiency Association met in Asker, a small city close to Oslo. The occasion was the Association's thirty-year anniversary, which of course had to be celebrated. "We are a small but strong-willed Association," said CEO Eva Brox, "When we were founded back in 1983 we were 10 members. Today, thirty years later, we are more than 200 members! Everything we have achieved in these years is well worth celebrating."

IDF Video Series for Nurses: Primary Immunodeficiency Diseases and Immunoglobulin Therapy - Available in French, German & Spanish
 
The Immune Deficiency Foundation (IDF) is proud to offer this free non-credit video series on primary immunodeficiency diseases and immunoglobulin therapy in French, German and Spanish. Based on the IDF Online Continuing Education Course, which was developed as an initiative of the IDF Nurse Advisory Committee, this video series enhances the knowledge of the nurse clinician by providing an update on primary immunodeficiency diseases, immunoglobulin therapies and the nurse's role with these therapies. Any nurse who is involved with ...

Marcia Boyle awarded with Patient Services, Inc.'s President Award
 

Marcia Boyle, IPOPI's Board Member and President of the Immune Deficiency Foundation (IDF, US) was awarded the inaugural President's Award from the Patient Services, Inc. (PSI), last April in Washington, DC.

Mrs Boyle was recognized by PSI for her leadership in the patient advocacy community. "I am honored to be the inaugural recipient of such a meaningful award," explained Mrs Boyle, "It is of the utmost importance to continue to bring a voice to the rare disease community."


Spain - AEDIP elected a new president
 
AEDIP 2013 Annual Assembly
During WPIW, on 27th April, AEDIP (Asociación Española de Déficits Inmunitarios Primarios) held its Annual Assembly where general elections and a report of activities took place. Carlos Jiménez Contreras was elected President following the Presidency of José González.

Swedish PID Summer camp announcement
 
August 9th-11th, the Swedish patient organisation for primary immunodeficiencies, PIO, invites member families with children with PID to the 13th annual Summer Family camp. In order to give you a flavour of what you can expect from this year's edition we leave you with a report from one of the participants of last year's Summer camp

The UCL Institute of Immunity and Transplantation
 
The Royal Free Hospital is located in North West London and looks after the largest number of patients with a Primary Immunodeficiency in the United Kingdom. On the 10th June the first phase of a major global medical research centre for immunity and transplantation was officially opened by HRH the Duke of York Prince Andrew. This centre has modern waiting rooms and treatment areas, consultants’ offices and consultation rooms, as well as state of the art research and laboratory facilities. Professor Hans Stauss, Head of the Institute, explained that the three clearly defined goals for the institute are:

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