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First European South East Asian PID-Meeting: From Bench to Bedside

Care-for-Rare initiates the first meeting between South-East Asian countries in order to improve the care of patients with rare diseases

The Care-for-Rare Foundation, along with the International Patient Organisation for Primary Immunodeficiencies and the Chulalongkorn University in Bangkok, set up the first South-East Asian PID-Meeting in Thailand. Doctors and hospital representatives, as well as researchers from Thailand, Vietnam, Malaysia, Indonesia, Singapore and the Philippines met for the first time on 26th January 2015 in Chulalongkorn University Hospital in Bangkok in order to lay the foundations for a South-East Asian Primary Immunodeficiencies (PID) society. The goal of this initiative is to enable patients with primary immunodeficiencies to have quicker access to a correct diagnose and treatment possibilities due to regional cooperation as well as to draw attention to primary immunodeficiencies on a worldwide scale. The meeting was also endorsed by the Thai minister for health.

Prof. Christoph Klein’s, board manager of the Care-for-Rare Foundation and director of the Dr. von Hauner Children’s Hospital, talk on the “Clinical challenges and novel diagnostic tools including NGS & new Therapies” ensured that the event got off to a successful start. In front of an audience of more than 100 participants, made up not only of leading PID experts, but also of lots of interested students, he encouraged the future doctors to think out of the box and to pursue new, unconventional treatment paths so as to be able to identify immunodeficiencies more quickly and in order to save those affected by them from embarking upon odysseys from one doctor to another. Prof. Klein’s talk was followed by a talk given by Prof. Martin van Hagen from Rotterdam on “Antibody deficiencies from bench to the bedside”, which was especially interesting for the students present. Experts from Malaysia, Singapore, Vietnam, the Philippines, Indonesia and Thailand had a chance to speak and gave accounts of the current situation for patients with primary immunodeficiencies in their countries. It became apparent that the necessary structures are lacking, particularly in Vietnam and the Philippines, and that the establishment of a regional network is of the utmost importance.

Johan Prévot, the managing director of the patient organisation IPOPI,emphasised just how important international cooperation is for the treatment of PID patients in his lecture on “The importance of stakeholder collaboration and International collaborations”. Subsequently, in a panel debate, the requirements and necessary next steps with regard to establishing a South- East Asian PID society were discussed and supported by IPOPI and Prof. Klein, who, due to his many years of experience in managing international PID networks and his direct access to cutting-edge research, would be able to take on an advisory role.

In order to bring this historic meeting to a close all those involved enthusiastically signed a “call for action” petition and by doing so declared themselves in favour of the prompt establishment of a South-East Asian society for primary immunodeficiencies. We are confident that this meeting has laid the cornerstone for a new regional cooperation, which will improve the care of patients with primary immunodeficiencies in South-East Asia in the long term. We would like to thank the IPOPI and the Chulalongkorn University for their outstanding and successful cooperation!

The Care-for-Rare Foundation is dedicated to helping children worldwide who are suffering from rare diseases receive better care. The foundation aims to use its funding lines Awareness and Alliance to draw attention to the fate of those children suffering from rare diseases and to join together experts from all over world to form a strong and powerful network.

Dr. Albrecht Matthaei

Tel: + 49 89 4400-57982
Fax: +49 89 4400-57702

 

"We at South East Asia Primary Immunodeficiencies Network (SEAPID), are very proud and honoured to be associated as an international partner of Care for Rare Foundation  which has given tremendous assistance and support in the development of Primary Immunodeficiencies in this region.

With this partnership bond we are positive of a brighter future for PID. Another plus for humaneness.”

Dr. Adli Bin Ali,
Coordinator South East Asia Primary Immunodeficiencies Network,
Kuala Lumpur, Malaysia