june 2009
Jun 17, 2009
On behalf of the Board - greetings from IPOPI.
This e-update is later than we expected but only because we have been so very busy! The Board enjoyed and participated in the IPPC meeting in Paris in early March where issues relating to product safety, availability and affordability were looked at closely - and of course it also gave an ideal opportunity for the Board to meet and share views.
Jun 17, 2009
The scientific programme of the ESID 2008 meeting was very interesting and full of very useful information.
Jun 17, 2009
The Board of IPOPI have been hard at work since the meeting in Den Bosch.
Jun 17, 2009
Rare diseases are often chronic, progressive, degenerative, life-threatening and disabling diseases.
Jun 17, 2009
This is the second time I assist in representation of my association to this kind of Conference so it has been a real a privilege from all points of view because it gives me the possibility to see the enormous effort made by ESID, INGID and IPOPI working together.
Jun 17, 2009
This year, alongside the 21st congress, we will try to establish a joint meeting on Primary Immunodeficiency Diseases.
Jun 17, 2009
IPOPI is keen to encourage new national patient organisations to become part of IPOPI and part of the growing global movement to support primary immunodeficient patients around the world.
Jun 17, 2009
On February 28 of 2009, the World Rare Disease Day took place at the Planetario Park in the city of Buenos Aires with the participation of several rare diseases organizations.
Jun 17, 2009
The Immune Deficiency Foundation (IDF) has developed a program exclusively for teens, ages 13 – 22, diagnosed with primary immunodeficiency diseases.
Jun 17, 2009
Young adults in The Netherlands are busy coordinating a program for youth, ages 12 – 16. This program will be scheduled in November, 2009 on The Netherlands NMO Day.
Jun 17, 2009
On March 16, 2009 the Danish Immunodeficiency Association celebrated its 25th Anniversary.
Jun 17, 2009
The group is called BOPPI (Belgian Organization for Patients with Primary Immunodeficiencies).
Jun 17, 2009
On Saturday 21 March 2009 at the sport centre of Montichiari near Brescia a football match “La Partita del Sole” (the match of the sun) was organised to improve awareness on PIDS and fundraise for AIP.
Jun 17, 2009
Together with the immunodeficiency policlinics the German group DSAI organized 4 school events in Berlin and Munich.
Jun 17, 2009
On Saturday 18 April we had this year’s first meeting, as usual in Amsterdam.
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IPOPI would be grateful for any support to the important work for primary immunodeficiencies.
Contact
Executive Director: Johan Prevot
Email: johan@ipopi.org
Tel/Fax: +351 21 407 5720
UK office
Firside Main Road Downderry
Cornwall PL11 3LE
United Kingdom
Tel: +44 1503 250 668
Fax: +44 1503 250 961
E-mail: info@ipopi.org
Email: johan@ipopi.org
Tel/Fax: +351 21 407 5720
UK office
Firside Main Road Downderry
Cornwall PL11 3LE
United Kingdom
Tel: +44 1503 250 668
Fax: +44 1503 250 961
E-mail: info@ipopi.org
IPOPI is a charity registered in the UK.
Registration No. 1058005
Registration No. 1058005