Alpha One Foundation was established in 2001 to promote research into Alpha 1, to improve diagnosis, treatment and to improve life expectancy and lifestyle of people with this condition.

Alpha 1 Antitrypsin is an important protein produced by the liver, which is released into the bloodstream and travels to the lungs. It protects the lungs from the destructive actions of common illnesses and exposures, particularly tobacco smoke.

Alpha 1 Antitrypsin Deficiency (Alpha 1) is an inherited genetic condition and along with Cystic Fibrosis it is the commonest fatal disease in Ireland. It is estimated to affect more than 1000 people nationally.

Please visit our website: www.alpha1.ie

The European Haemophilia Consortium (EHC) is working to reduce the burden of the disease on both the individual and on society. Its mission is to improve the quality of life of people with Haemophilia in Europe. The EHC has 44 member organisations including members in all 27 EU Member States and the 2 candidate countries Croatia and Turkey. EHC’s EU Political Advocacy Programme: the objectives are to represent and to promote the interests of People with Haemophilia towards policy makers and the public at EU and at national level. Close cooperation and networking with interested groups and stakeholders is very much appreciated. Visit our website: www.ehc.eu  

The Guillain-Barré Syndrome Foundation International
The Guillain-Barré Syndrome / Chronic Inflammatory Demyelinating Polyneuropathy Foundation International, a non-profit 501(c)(3) organization, was founded by Robert and Estelle Benson as a means of helping others deal with this frightening disorder. Since its inception in 1980, self-funded with less than a handful of volunteers, this grass roots effort has become an international organization with 23,000 members in 160 chapters on five continents.

As the GBS community expanded, the Foundation chapters in the United Kingdom, Australia, India and Canada became full-fledged organizations in their own right. Since that time, the Foundation has expanded its interests and established additional groups for GBS variants, including CIDP, Children with GBS, Axonal GBS’ers, Camploybacter Precipitated GBS, and Teenagers with GBS.

Providing support and assistance to GBS/CIDP patients and their families and committed to increasing knowledge and awareness in both the public and professional communities, the Foundation provides print information and educational opportunities, sponsors worldwide meetings, lectures and support groups, hosts the bi-annual GBS/CIDP International Symposium and encourages new findings by awarding research grants for further study and experimentation. The organization continually raises awareness by exhibiting at neurological conferences all over the world, by direct mail, by personal contact with hospitals, emergency rooms and physicians, and through their quarterly newsletter, The Communicator. As new information becomes available, it is distributed to chapters and support groups who host local and regional meetings all over the world.

Please visit our website: http://www.gbsfi.com/index.html

HAEI – International Patient Organization for C1 inhibitor Deficiencies - is a global organization dedicated to raising awareness of C1 inhibitor deficiencies around the world. It is a non-profit international network of national HAE patient Associations.

HAEI is established to promote co-operation, co-ordination and information sharing between HAE Specialists and National HAE Patient Associations in order to help facilitate the availability of effective diagnosis and management of C1 inhibitor deficiencies throughout the world.
Our purpose is to join the efforts and experience of the global HAE community to achieve optimal standards of care and treatment for all those patients affected by C1 inhibitor deficiencies. Please visit our website: http://www.haei.org/

The World Federation of Hemophilia improves and sustains care for people with inherited bleeding disorders around the world. The WFH is an international patient organization with national member organizations in 109 countries. Throughout our history of over 40 years we have worked to ensure the safety of treatment for hemophilia and other inherited bleeding disorders, educate care-givers and patients and build a coalition of manufacturers, government and patient organizations to reach our goal of “Treatment for All.” Visit our website: http://www.wfh.org

International Patient Organisation for Patients with Primary Immunodeficiencies (IPOPI)
IPOPI is an international organization whose members are national patient organizations for the primary immunodeficiencies (PID's). It was formed to benefit and serve its members and patients with primary immunodeficiencies. Its pupose is to unite the experience, expertise, resources and influence of its members in order to achieve worldwide improvement in the care and treatment of patients with PID's. Visit our website at http://www.ipopi.org

The ITP Support Association Founded in June 1995, its aims are to promote the welfare of ITP patients, fund clinical research and to collaborate with the medical profession in collating and disseminating clinical data. The Association provides patient support, a contact network, organises annual conventions, seminars for health professionals and publishes numerous booklets and facsheets on ITP related subjects in addition to its quarterly newsletter, The Platelet. Assisted by 6 eminent medical advisors it is the only UK organisation supporting patients with ITP. The ITP Support Association is a non profit-making registered charity, and all Association workers are volunteers. Visit our website at http://www.itpsupport.org.uk  

The Jeffrey Modell Foundation was established in 1987 by Vicki and Fred Modell in memory of their son Jeffrey, who died at the age of 15 of pneumonia due to an underlying Primary Immunodeficiency disease. The Foundation is dedicated to early and precise diagnosis, meaningful treatments, and ultimately cures for the ever increasing known Primary Immunodeficiency Diseases.

Our Focus

• To affirm its absolute commitment to clinical and basic research.
• To serve as a national and international source for the dissemination of information and education.
• To serve as a tireless, compassionate advocate on behalf of patients and families.
• To promote public awareness of the Primary Immunodeficiency diseases through programs involving our lawmakers as well as lay, scientific, and medical communities.
• To affirm its commitment to turn pain, despair and Suffering of immunodeficient children and adults into comfort and hope.

Today there are 42 Jeffrey Modell Research and Diagnostic Centers, more than 300 Referral Centers worldwide and The Jeffrey Modell Immunology Center at Harvard Medical School which serves as a unique graduate facility for the study of immunology. Please visit our website: www.info4pi.org  

Supporting media

Published since 1984, International Blood/Plasma News (IB/PN) is a leading source of business information about the blood/plasma industry worldwide. It is published monthly by The Marketing Research Bureau, which is known as an authoritative source of market data and analysis in the areas of blood, plasma and biotechnology-based protein therapeutics. Visit our website at http://www.marketingresearchbureau.com/ibpn.htm