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Akmarul - Malaysia

Akmarul from Malaysia suffers from a chronic inflammatory bowel disease. In order to find out what exactly was wrong with him and how he could be best helped, the Care-for-Rare Foundation invited him to come to Germany to be examined by a specialist in Munich. A rare gene defect seems to be the cause of his suffering.


Akmarul is nine year old and lives in Malaysia with his parents and brother. From an early age onwards he has suffered from massive refractory infections in his gastrointestinal tract and his Malaysian doctors have so far not been able to help him. In November 2014 the Care-for-Rare Foundation made it possible for Akmarul and his family to come to Munich in order for Akmarul to be examined at the Dr. von Haunerschen Childrens’ Hospital. The family was also accompanied by Akmarul’s Malaysian doctor who not only provided medical care throughout the journey, but also took on the role of interpretor.

Akmaral underwent extensive specialised tests during his two-week stay in the hospital and doctors and scientists suspect that a gene defect is the trigger for his symptoms. Akmaral was found to have a new kind of gene defect belonging to the class of chronic inflammatory bowel diseases and this was identified using innovative methods of genetic testing. It is now necessary to identify the exact disease mechanisms through comprehesive scientific research. Akmarul is now being cared for in Kuala Lumpur again and the Dr. von Haunerschen Childrens’ Hospital team is in close contact with his doctors there and are working flat out to develope a treatment strategy for him.

Akmarul will not benefit from these intensive efforts alone. Many other children with chronic inflammatory bowel diseases are waiting for a diagnosis, without which a cure is not possible. Elaborate diagnostic techniques and  research efforts are, however, costly and because of this the Care-for-Rare Foundation is collecting donations for research into rare bowel diseases so as to be able to provide children suffering from these diseases with the chance of a cure.

Your Contact:

Dr. Albrecht Matthaei

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