IPOPI - Spring 2013

Spring 2013

 
in this edition
 
From the Chairperson's desk
IPOPI News:
1st International Primary Immunodeficiencies Congress >
SCID Newborn Screening moving ahead in Europe >
PLUS: always positive! >
IPOPI took part in the 19th International Protein Plasma Congress >
IPOPI attends 2nd JMF Centres Network SCID Newborn Screening Meeting >
IPOPI on Twitter >
Final Countdown to the 3rd World PI Week! >
IPOPI attends Rare diseases day events >
New set of IPOPI patient information leaflets now available in Spanish >
IPOPI Staff update >
Around the world:
Healthcare in Africa Summit >
ESID registry news >
European commission updates >
Argentina Rare Diseases Day >
Germany - dsai intensifies social media activities >
Romania - ARPID is spreading the message in the local media >
Brazil - first Primary Immunodeficiency Center in the state of Paraiba >
IDFA - SCIg advocacy campaign >
Annual General Assembly of APDIP - Portuguese NMO >
From the Chairperson's desk...
 
Dear Friends,

Spring is in the air and IPOPI did not hibernate during the winter season! This year, IPOPI is committed to continue the numerous projects and campaigns started in 2012. However 2013 is also a year of new challenges and exciting projects.

1st International Primary Immunodeficiencies Congress
 
Join us in Estoril (Lisbon), Portugal, 7 - 8 November 2013 - REGISTER NOW and BENEFIT from early Bird Rates!

Haven't heard about IPIC yet? IPIC is the first International Primary Immunodeficiencies Congress organised by the International Patient Organisation for Primary Immunodeficiencies (IPOPI).

SCID Newborn Screening moving ahead in Europe
 
The IPOPI policy campaign advocating for the implementation of SCID newborn screening in the European Union Member States is paying off.

PLUS: always positive!
 
PLUS, the Platform of Plasma Protein Users, recently held its annual general assembly meeting at the Irish Haemophilia Society Offices in Dublin, Ireland.

IPOPI took part in the 19th International Protein Plasma Congress
 
The International Plasma Protein Congress (IPPC), organised each year by the Plasma Protein Therapeutics Association (PPTA), was held in the city of Dublin on the 5th and 6th of March.

IPOPI attends 2nd JMF Centres Network SCID Newborn Screening Meeting
 
Current status of newborn screening and treatments for primary immunodeficiency was the theme of the 2nd JMF Centres Network Newborn Screening Meeting held in Zurich on 27 and 28 February.

IPOPI on Twitter
 
IPOPI is now on Twitter
Add @ipopi_info to you #ff list

Final Countdown to the 3rd World PI Week!
 
The Final countdown to the third edition of the World Primary Immunodeficiencies Week has started!

IPOPI attends Rare diseases day events
 
Johan Prévot participated in the Eurordis policy meeting on the transparency directive and the annual rare diseases Black pearl Gala dinner held in Brussels on 26 February 2013.

New set of IPOPI patient information leaflets now available in Spanish
 
Diagnóstico de las inmunodeficiencias primarias, La atención del paso de niño a adulto, Inmunodeficiencias primarias en los adultos

The recently released set of new IPOPI patient information leaflets (Diagnosis of PID, Moving from child to adult care, PID in adults) is now available in Spanish and can be found here.

IPOPI Staff update
 
IPOPI recently welcomed a new member of staff. Carla Morgado started working for IPOPI as Executive Assistant to Johan Prevot on 1 February 2013.

Healthcare in Africa Summit
 
February 20-21, Cape Town, South Africa

Cape Town was the host city of the 2013 Healthcare in Africa Summit which focused on identifying healthcare solutions designed to meet the needs of patients in the region.

European commission updates
 
The European Commission (EC) recently took two important steps which benefit the Primary Immunodeficiencies community in terms of policy of access to treatment.

Argentina Rare Diseases Day
 
To mark the World Day of Rare Diseases on Thursday 28th February, the Association for Primary Immunodeficiencies (AAPIDP), in Argentina joined the day of activities organized by the Argentine Federation of Rare Diseases, (FADEPOF), at the Air Force Square in Buenos Aires, Argentina.

Germany - dsai intensifies social media activities
 
In August 2012 dsai (German Patient Organisation for Primary Immunodeficiencies) launched a blog, in which data is regularly added.

Romania - ARPID is spreading the message in the local media
 
In January ARPID (Romania) was able to publish an article about PID in the local online maternity magazine 'Totul Despre Mame'.

Brazil - first Primary Immunodeficiency Center in the state of Paraiba
 
ABRI (Associação Brasileira de Imunodeficiência) is pleased to inform e-News readers that last September the first Primary Immunodeficiency Centre in the state of Paraiba was opened. This initiative was made possible thanks to the partnership of the Regional ABRI -Paraiba, the Government of Paraiba and the Secretary of Health.

IDFA - SCIg advocacy campaign
 
After the IPOPI Bi-annual meeting in Florence 2012, IDFA mounted an advocacy campaign for SCIg to be funded in Australia. At that stage, SCIg was approved for use, but not funded, so very few patients had access to it.

Annual General Assembly of APDIP - Portuguese NMO
 
The General Assembly of the Portuguese Association of Patients with Primary Immunodeficiencies (APDIP) was held on February 2, 2013, in Loures, near Lisbon. This Assembly elected the new corporate members and approved the new action plan for the next two years of mandate.

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