IPOPI - Winter 2012

Winter 2012

 
in this edition
 
From the Chairperson's desk
IPOPI News:
First International Primary Immunodeficiencies Congress (IPIC), 2013 >
New IPOPI Survey Report Available! >
New IPOPI Patient Information Leaflets out now >
IPOPI PID Forum on Implementation of National Rare Diseases Plans >
XIIth Biennal meeting - Florence, Italy >
First IPOPI Bob LeBien Award Ceremony >
Luciano Vassalli Award distinguished Audrey Rigault from France >
IPOPI Board of Directors Officials Elections >
Awareness Campaign Workshop in Barcelona >
IPOPI participates in ISNS European Newborn Screening Meeting in Budapest >
IPOPI SCID Newborn Screening Advocacy Campaign >
First series of IPOPI Patient Information Leaflets now available in Serbian, Romanian and Portuguese >
Around the world:
EudraCT Joint Operational Group (JOG) >
IPOPI attends EHC Congress in Prague >
Germany: Cooking event with children >
Argentina - Family Day Report >
Regional Meeting with Physicians in Esquel, Argentina >
IPD Venezuela - news from one of the newest IPOPI members >
AEDIP has a new Facebook page >
3rd ASID Congress, South Africa >
Industry news >
France: Interview with Professor Marina Cavazzana-Calvo >
From the Chairperson's desk...
 
Dear Friends,

It is hard to believe that 2012, the year of IPOPI's 20th anniversary, is already coming to an end! It has been a truly successful year filled with new activities and exciting projects for IPOPI and it feels like it has just gone in a flash!

First International Primary Immunodeficiencies Congress (IPIC), 2013
 
Estoril (Lisbon), Portugal

REGISTRATION NOW OPEN!

The preliminary programme of IPOPI's First International Primary Immunodeficiencies Congress (IPIC) is now available online on the congress website www.ipic2013.com.

New IPOPI Survey Report Available!
 
IPOPI is pleased to announce that the report of IPOPI's new survey looking at PID Patients Needs and Outlooks is now available on the IPOPI website here.

New IPOPI Patient Information Leaflets out now
 
Diagnosis of PID, Moving from Child to Adult care and PID in adults

IPOPI is pleased to announce the publication of three new patient information leaflets comprising helpful information and guidance for patients, their families and other interested stakeholders of the Primary Immunodeficiencies (PID) community.

IPOPI PID Forum on Implementation of National Rare Diseases Plans
 
IPOPI's 3rd PID Forum on the “IMPLEMENTATION OF NATIONAL RARE DISEASES PLAN: CENTERS OF REFENCE AND PATIENT REGISTRIES” was held on 26 September 2012 at the European Parliament in Brussels, Belgium.

IPOPI's XIIth Biennal meeting - Florence, Italy
 
The IPOPI XIIth Biennal meeting in conjunction with the XVth ESID and Xth INGID took place on 3-6 October in Florence, Italy.

First IPOPI Bob LeBien Award Ceremony
 
The first IPOPI Bob LeBien Award Ceremony was held on the occasion of IPOPI's 20th anniversary during the XIIth Biennial Meeting in Florence.

Luciano Vassalli Award distinguished Audrey Rigault from France
 
The winner of the 2012 IPOPI Luciano Vassalli Award is Audrey Rigault from IRIS (IPOPI's NMO in France). The Award ceremony chaired by Sven Fandrup (IPOPI) took place during the IPOPI Biennial Meeting in Florence on 3 October 2012 and was also one of the highlights of this year's Meeting.

IPOPI Board of Directors Officials Elections
 
Following the IPOPI Board elections held in Florence on Friday 5 November during which Jose Drabwell, Marcia Boyle, Martine Pergent and Roberta Peña were re-elected as Board Members by IPOPI's General Assembly, the Board held its Chairperson and Officials election on Saturday 6 November in Florence, Italy.

Awareness Campaign Workshop in Barcelona
 
As part of its PID Awareness Campaign NMO programme IPOPI organized a workshop on the 17th of November in Barcelona, Spain. Participants included IPOPI, representatives from AEDIP (the Spanish Association of Patients with PIDs) and key Spanish medical stakeholders.

IPOPI participates in ISNS European Newborn Screening Meeting in Budapest
 
IPOPI actively participated in the 8th European Neonatal Screening Regional Meeting organised by the International Society for Neonatal Screening (ISNS).

IPOPI SCID Newborn Screening Advocacy Campaign
 
The IPOPI policy campaign advocating for the implementation of SCID newborn screening in the European Union Member States intensified since the summer. IPOPI met with additional Members of the European Parliament to take forward its call to action.

First series of IPOPI Patient Information Leaflets now available in Serbian, Romanian and Portuguese
 
The first series of IPOPI patient information leaflets were recently translated into three new languages thanks to the great work of our local NMOs, POsPID from Serbia, ARPID from Romania, ABRI from Brazil and APDIP from Portugal.

EudraCT Joint Operational Group (JOG)
 
On the 21st September there was a meeting at the European Medicines Agency (EMA) regarding the update of the EudraCT and EU CTR (Clinical Trial Register).

IPOPI attends EHC Congress in Prague
 
IPOPI was pleased to attend the European Haemophilia Consortium Annual Conference in Prague, Czech Republic on 26-29 October 2012.

Germany: Cooking event with children
 
Together with Frankfurts TV-cook Mirko Reeh dsai organised a cooking event with children. Mirko showed the little cooks, 7 thru 11 years, how to cook a healthy menu with regional and fresh products.

Argentina - Family Day Report
 
The Argentine Association for Primary Immunodeficiencies (AAPIDP) organized a family day on the 3rd of November 2012 at the Military Center Club, Vicente Lopez, Buenos Aires.

Regional Meeting with Physicians in Esquel, Argentina
 
The Argentine Association for PIDs (AAPIDP) and IPOPI are continuing their work to spread and increase awareness of PIDs. A new regional meeting was held by AAPID at the Cultural Center Melipal in Esquel, Argentina, on the 31st of August.

IPD Venezuela - news from one of the newest IPOPI members
 
The Venezuelan PID patients association 'Asociación Civil Inmunodeficiencias Primarias Venezuela' (IDPVenezuela) was created in June 2012 by Dr. César Maldonado with the main objective of raising local awareness for PIDs. Recently during IPOPI's XIIth Biennial Meeting IPD Venezuela was granted full IPOPI national member organization status.

AEDIP has a new Facebook page
 
As part of AEDIP 2013's communication plan, a new Facebook page was recently launched.

3rd ASID Congress, South Africa
 
The African Society for Immunodeficiencies (ASID) will hold its third Congress in Sun City, South Africa on 5-9 June 2013.

Industry news
 
It is with great regret that IPOPI learnt Charles Waller is no longer working for the Plasma Protein Therapeutics Association (PPTA).

France: Interview with Professor Marina Cavazzana-Calvo
 
A pioneer of innovative therapies for PID and "Woman Scientist of the Year"

Marina Cavazzana-Calvo, Professor of Medicine at Paris Descartes University, Research Director at the Centre for Clinical Research in Biotherapy (Necker Hospital, Paris), was recently presented with the "Woman Scientist of the Year Award" for her pioneering scientific achievements in the therapy of immune deficiencies and inherited hematologic diseases.

"e-News is brought to you through an unrestricted grant from Biotest"
If this email is not displayed correctly, please click here.

If you no longer wish to receive our regular updates, or if you've changed your email address then please contact us.


Contact Details: www.ipopi.org , Email: info@ipopi.org