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Dr. Bengt Hagberg ~ Champion to Those Living with RS

It is with a heavy heart, we share that Dr. Bengt Hagberg has passed away. Dr. Hagberg was a great friend to the Ontario Rett Syndrome Association and the Rett syndrome community. Dr. Hagberg played an instrumental role in educating the medical community about a mysterious female disease and the naming of Rett syndrome. Dr. Andreas Rett, an Austrian developmental pediatrician, who published a paper in 1966 in a German-language medical journal that described a number of cases of girls with a repetitive hand movement. The paper went unnoticed unfortunately. In 1981 in Toronto, Dr. Hagberg and Dr. Rett had a chance meeting at a medical conference where they discussed Dr. Rett’s paper and similar cases Dr. Hagberg was observing. In 1983, Dr. Hagberg and colleagues published a paper in the English language describing 35 females that had a similar disease progression. This English-language paper did get noticed. The naming of the disorder followed. It has been stated that the neurological disorder known as Rett syndrome today, might have been known as Rett Hagberg syndrome or Hagberg Rett syndrome or Hagberg syndrome. Due to the graciousness of Dr. Bengt Hagberg it is known of Rett syndrome. Paying tribute to Dr. Andreas Rett and his published paper in 1966.


In October 2004, Dr. Bengt Hagberg was the key note speaker at the Future Horizon Conference held in Ottawa and co-sponsored by the Ontario Rett Syndrome Association and the International Rett Syndrome Association. Dr. Hagberg always spoke with affection about his relationship with O.R.S.A. and its role in Canada. His devotion and affection to the children and adults living with Rett syndrome was felt over three decades. He followed the first children he diagnosed with Rett syndrome. He had a dedication to have the girls grow into women with the best life possible. Dr. Bengt Hagberg was respected worldwide for his knowledge on Rett syndrome. O.R.S.A.’s president, Terry Boyd, has had the privilege of spending time with Dr. Hagberg throughout the past two decades. “It has been a privilege to have known Dr. Bengt Hagberg. He was a champion to all those living with Rett syndrome. We have lost a true friend within the Rett syndrome community.”