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Calling UK Norrie families - Dual Sensory Clinics for children and young people up to 18 yrs

Great Ormond Street Hospital, London are building the new Sight and Sound centre.  The Norrie disease community have been invited to take part in an exciting pilot programme for dual sensory clinics ahead of completion of the new centre.   Children with Norrie disease up to the age of and including 18 years are invited to attend GOSH for two appointments. 

The initial assessment will be a dual sensory appointment with ophthalmology, audiology and vestibular testing. The appointment will take up to 4 hours.

There will be a subsequent second audiology assessment, 6 months after the initial clinic visit, to check for any decline in hearing. For those traveling long distances, reasonable standard rate traveling expenses will be reimbursed, though GOSH cannot pay for any overnight stay.

How to get an appointment for the clinics

To attend the clinics, families should ask for a referral from their GP giving them the information in this email to support the referral.

The referrals should be made to Dr Waheeda Pagarkar (Consultant Audiovestibular Physician) and Mr Robert Henderson (Consultant Ophthalmologist)

Great Ormond Street Hospital
Great Ormond Street
London, WC1N 3JH.

Existing GOSH patients will not need to get a referral letter from their GPs but can register their interest at This email address is being protected from spambots. You need JavaScript enabled to view it. who will help connect you with the clinic organiser at GOSH.

Why are GOSH holding these appointments?

UCL GOSH-ICH  researchers are working very hard towards finding therapies for children and adults with Norrie to improve the quality of their lives especially the hearing loss.

The dual sensory clinic at GOSH is being established to provide a unique diagnostic facility with support for patients and families with these conditions.

The aim is to have patients seen in a multidisciplinary environment, with expertise provided by audiology, ophthalmology and genetics so that GOSH can better support patients and families with these difficult dual sensory conditions.

A complete assessment will play a vital part in supporting the current research at UCL GOSH-ICH as it will help build a better picture of how Norrie presents in each person, starting from childhood; it will further enable researchers to track the progression of the disease in each patient.

These appointments need to have taken place by March 2020. If you have any questions please email This email address is being protected from spambots. You need JavaScript enabled to view it.