Rare Diseases Centre

How to get an appointment

Your GP or healthcare professional can refer you.

Changing your appointment

To change or cancel your appointment, please contact your specialist clinic.

If you do not attend your appointment, your specialist clinic will decide if you can rebook it.

Before your appointment

Please arrive no more than 15 minutes before your appointment time.

We'll send a letter or call you with any extra information you need before your appointment.

Please bring with you:

  • a list of medicines you take
  • details of any other health professionals you have seen recently about your condition

During your appointment

You'll see specialists for your rare condition. You may see several health professionals during your appointment.

Your appointment may last for several hours or a whole day. This depends on the tests and consultations you need

Your treatment team will give you more detail about what to expect at your appointment.

After your appointment

After your appointment, we'll write to your GP and other professionals involved in your care, if appropriate. We'll send you a copy of this letter.

We'll arrange any follow-up appointments.

Your treatment team will give you their contact details or they'll be listed in your clinic letter. Please contact your treatment team if you have any questions or concerns.

Last updated: October 2023

Contact us

For more information, please contact us.

Do you have any comments or concerns about your care?

Contact our Patient Advice and Liaison Service (PALS)

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