​​​ Image of The Elizabeth Raab Neurofibromatosis Clinic
The Elisabeth Raab Neurofibromatosis Clinic at TGH is the first of its kind in Canada. (Photo: UHN)

The Elisabeth Raab Neurofibromatosis Clinic, the first-in-Canada multidisciplinary clinic for adults with neurofibromatosis that will focus solely on this genetic disorder, is now open at Toronto General Hospital, thanks to a generous donation by an anonymous donor​.

An estimated 10,000 Canadians are living with neurofibromatosis, a disorder that disturbs cell growth in the nervous system. The disease can be difficult to diagnose, since all body systems can be involved, either directly or through neural or vascular influences.​

The clinic will advance treatment and understanding of neurofibromatosis in three key areas:

  • Clinical care: On an outpatient basis, the clinic will assess, monitor and care for individuals from across Canada and North America living with neurofibromatosis, and speed up the accurate diagnosis of those exhibiting symptoms related to this condition.
  • Clinical research: Clinical research focused on the patients visiting this specialized clinic will help provide a better understanding of neurofibromatosis, how many people are affected by it and how to develop new and improve existing treatments for the disease.
  • Basic science: Scientific research in the laboratories of the Centre for Research in Neurodegenerative​ Diseases (CRND) and the MARS building will seek to better understand the genetic foundations of neurofibromatosis; how neural dysfunction occurs; and find possible ways to halt or reverse nerve damage.

Global impact

The Elisabeth Raab Neurofibromatosis Clinic was spearheaded by Dr. Michael Baker, Rose Family Chair in Palliative Medicine and Complex Care at UHN, who passed the torch to Dr. Vera Bril, co-director of the clinic along with Dr. Gelareh Zadeh, a neuro-oncology neurosurgeon at Toronto Western Hospital.

"The clinic will offer a multidisciplinary team from neurology, neurosurgery, neuro-oncology, medical genetics and genetics counseling," says Dr. Bril who is also Head of Neurology, UHN and Interim Medical Director of the Krembil Neuroscience Centre.

"We must always look for ways to improve the care for patients who suffer from a chronic disease, and we now have that chance thanks to this incredible commitment from this generous donor​."

"The opening of this clinic marks a new stage in treatment of adult neurofibromatosis," adds Dr. Zadeh. "We hope to move the field forward and have global impact by eventually curing neurofibromatosis,"​

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