Presentazione di PowerPoint

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Xth IPOPI Meeting s-Hertogenbosch, 16-19
October 2008
2008 Annual General Meeting CHAIRPERSON REPORT
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We had a dream
Chairperson Report AGM 2008
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and now we have a vision
WE WORK TO IMPROVE THE QUALITY OF LIFE FOR
PEOPLE WITH PRIMARY IMMUNODEFICIENCIES
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and we have a history
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Chairperson Report AGM 2008
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AWARENESS
is our motto!
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Severe Combined Immunodeficiency X-Linked
Agammaglobulinemia Common Variable
Immunodeficiency Chronic Granulomatous
Disease Wiskott-Aldrich Syndrome Hyper IgM
Syndrome
ENGLISH
GERMAN
FRENCH
SPANISH
PORTUGUESE
and RUSSIAN
Chairperson Report AGM 2008
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Round table with Industry
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e-Update December 2007

e-Update November 2006
e-Update July 2008
e-Update July 2007
e-Update Special
e-Update September 2008 in 6 languages
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STRENGTHENING NATIONAL PATIENT ORGANISATIONS
is our reason to exist!
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ENGLISH FRENCH SPANISH GERMAN PORTUGUESE RUSSIAN
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P P S S A C
PLASMA PRODUCT SAFETY, SUPPLY AND AFFORDABILITY
COMMITTEE
The overall purpose is to monitor the safety and
availability of the plasma products used by
primary immunodeficiency patients. Committe
members Marcia Boyle (Chair), Teresa Espanol,
Bianca Pizzera, Sven Fandrup, Stephen Baxter,
David Watters
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On-line up-dated Ig global list
Round Table with Industry
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Antibody Testing Cost 
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Immunoglobulin restored to EML
Paedriatric EML includes IV and SC Ig
Global Collaboration on Blood Safety (GCBS)
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EMEA/PCWP
Patient and Consumer Working Party
EU COMMISION TASK FORCE FOR RARE DISEASES
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REGIONAL ACTIVITY
SOUTH AFRICA
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REGIONAL ACTIVITY
NORTH AFRICA
Association dAide aux enfants atteints de
Déficits Immunitaires Primitifs
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REGIONAL ACTIVITY
LATIN AMERICA
2009 Columbia
LAGID Meeting
2008 Argentina First
Latin American Congress of Rare Diseases
Orphan Drugs
2010 Argentina ICORD
World Congress
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REGIONAL ACTIVITY
PACIFIC RIM
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NEW PROJECTS

• NMO SUPPORT PROGRAMME

• TWINNING

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The IPOPI NMO SUPPORT PROGRAMME has
been created to assist mainly new and emerging
NMOs to become effective organisations helping
with primary immunodeficiencies throughout the
world. However, the fund is also open to all
NMOs as a resource to encourage programs to
improve diagnosis and optimal treatment and care
for people with primary immunodeficiencies.
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WHAT IS TWINNING? Twinning is a FORMAL, TWO-WAY
COLLABORATION or PARTNERSHIP between two IPOPI
NMOs. The objective? The objective is to
strengthen emerging or struggling NMOs for the
improvement of PID diagnosis and management. The
direct association with IPOPI enhances the
transfer of skills and knowledge between
established and emerging NMOs. The skills that
are transferred may relate to patient advocacy,
management, fundraising and public relations.
Through co-operation and partnership, PID
patient organisations are strengthened.
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Round table with Industry