international patient organisation for primary immunodeficiencies

International Patient Organisation

for Primary Immunodeficiencies

May, 8th 2006 Eva Soergel

IPOPI Presentation - ESID Spring Meeting in Prague 2006

IPOPI Information – Sitemap

Vision Page 3

Mission Page 4 - 5

Activities Page 6 - 8

IPOPI organisation Page 9

Coming soon Page 10

Summary Page 11 - 12



IPOPI – Vision Statement

The global organisation working to improve the quality of life

for people with Primary Immunodeficiencies



IPOPI – Mission

National Member Organisations (NMOs) so far in:

-> North America

-> South America

-> Europe

-> Africa

-> Asia

-> Australasia



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



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




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




Providing publications such as

-> a starter kit for new NMOs

-> an electronic toolkit for existing NMOs

-> a website with helpful information links: http://www.ipopi.org

-> a digital newsletter

-> occasional relevant documentation



IPOPI – Organisation

IPOPI is managed by a Board of volunteers – who are electedat 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



IPOPI – Coming soon

The next events are:

-> June 19-20, 2006 EU Consensus Conference forPrimary ImmunodeficienciesPaul-Ehrlich-Institute, Langen, Germany

-> Oct. 4-7, 2006 Biannual Meeting, Budapest, Hungary



IPOPI – Summary

Please remember that IPOPI exists to help patients through theirNMOs 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 effectivenational voice !



IPOPI – Summary

Thank you for your attention

Contact IPOPI:

e-mail: [email protected] website: http://www.ipopi.org

international patient organisation for primary immunodeficiencies

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