International Patient Organisation for Primary Immunodeficiencies

Page 2 May, 8th 2006 Eva Soergel IPOPI Presentation - ESID Spring Meeting in Prague 2006 IPOPI Information – Sitemap Vision Page 3 Mission Page Activities Page IPOPI organisation Page 9 Coming soon Page 10 Summary Page

Page 3 May, 8th 2006 Eva Soergel IPOPI Presentation - ESID Spring Meeting in Prague 2006 IPOPI – Vision Statement The global organisation working to improve the quality of life for people with Primary Immunodeficiencies

Page 4 May, 8th 2006 Eva Soergel IPOPI Presentation - ESID Spring Meeting in Prague 2006 IPOPI – Mission  National Member Organisations (NMOs) so far in: -> North America -> South America -> Europe -> Africa -> Asia -> Australasia

Page 5 May, 8th 2006 Eva Soergel IPOPI Presentation - ESID Spring Meeting in Prague 2006 IPOPI – Mission  IPOPI exists to -> work to improve access to early diagnosis and optimal treatment and care -> promote the establishment and support the work of NMOs -> be a strong effective voice for NMOs

Page 6 May, 8th 2006 Eva Soergel IPOPI Presentation - ESID Spring Meeting in Prague 2006 IPOPI – Activities  IPOPI will achieve those A I M S by representing -> at relevant conferences -> on blood safety forums -> through links with stakeholders in industry -> at government ministries where appropriate

Page 7 May, 8th 2006 Eva Soergel IPOPI Presentation - ESID Spring Meeting in Prague 2006 IPOPI – Activities  Supporting NMOs by -> monitoring the international supply of immunoglobulins -> assisting in the development of new NMOs -> communicating regularly with established NMOs -> facilitating a biannual congress in close partnership with the professional organisations of clinicians (ESID) and nurses (INGID) -> cooperating with established support groups

Page 8 May, 8th 2006 Eva Soergel IPOPI Presentation - ESID Spring Meeting in Prague 2006 IPOPI – Activities  Providing publications such as -> a starter kit for new NMOs -> an electronic toolkit for existing NMOs -> a website with helpful information links: -> a digital newsletter -> occasional relevant documentationhttp://

Page 9 May, 8th 2006 Eva Soergel IPOPI Presentation - ESID Spring Meeting in Prague 2006 IPOPI – Organisation  IPOPI is managed by a Board of volunteers – who are elected at the IPOPI biannual congress  The chairman of the Medical Advisory Panel is a member of the Board  The day to day functioning of the organisation is the responsibility of the Executive Director and staff

Page 10 May, 8th 2006 Eva Soergel IPOPI Presentation - ESID Spring Meeting in Prague 2006 IPOPI – Coming soon  The next events are: -> June 19-20, 2006EU Consensus Conference for Primary Immunodeficiencies Paul-Ehrlich-Institute, Langen, Germany -> Oct. 4-7, 2006Biannual Meeting, Budapest, Hungary

Page 11 May, 8th 2006 Eva Soergel IPOPI Presentation - ESID Spring Meeting in Prague 2006 IPOPI – Summary  Please remember that IPOPI exists to help patients through their NMOs worldwide  By being many and working together we will be strong. That way we can improve the quality of life – for patients who are already diagnosed as well for patients who are still suffering without correct diagnoses  Remember as well that NMOs are an important and effective national voice !

Page 12 May, 8th 2006 Eva Soergel IPOPI Presentation - ESID Spring Meeting in Prague 2006 IPOPI – Summary Thank you for your attention Contact IPOPI: website: