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“rare”

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"Miracle Millie" celebrates first year since rare heart operation

Description: 12-year-old Millie has celebrated a year since becoming the first in the UK with her complex condition to have a rare heart surgery at Evelina London.

An egg-stra special Easter party for children with rare diseases

Description: Children with rare metabolic conditions were treated to an Easter party with a twist recently at Evelina London’s Ronald McDonald House.

Celebrating our services on Rare Diseases Day

Description: Evelina London is experienced in looking after some of the most complex children requiring care across multiple specialities.

First UK recruit for clinical trial treating rare disorder

Description: Evelina London has recruited the first child in the UK for a clinical research study looking at a treatment for a rare inflammatory condition.

New specialist service for patients with rare neurological conditions

Description: Evelina London Children’s Hospital will host a specialist service for patients with rare genetic conditions so they can receive earlier diagnosis.

Specialist nurses bring together families of children with rare neurological disorders

Description: Families from across England came together for a special support day dedicated to children with paediatric relapsing demyelinating disorders.

Study investigates the role of genetics in rare post-COVID condition

Description: A study has highlighted how rare variants of a gene that regulates the gut lining may increase the risk by up to 4 times of MIS-C.

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You could also try: uncommon (11), unusual (47), exceptional (14), atypical (3), extraordinary (5), odd (3), infrequent (3)

Syndactyly surgery (to separate fingers or toes that are joined)

Description: Information about surgery to separate fingers that are joined.
Url: /resources/patient-information/syndactyly-surgery.pdf

Accessory digit surgery

Description: Information about surgery to remove your child's extra little fingers or toes (accessory digits).
Url: /resources/patient-information/accessory-digit-surgery.pdf

Ear tag removal

Description: Information about surgery to have an accessory auricle removed.
Url: /resources/patient-information/ear-tag-removal.pdf

Blocked tear ducts

Description: Information about having a procedure to clear your tear ducts.
Url: /resources/patient-information/blocked-tear-ducts.pdf

What do you do?

Description: Find out what it's like to work at Evelina London by reading blogs written by our staff.
Url: /about-us/who-we-are/history/a-history-of-care/what-do-you-do/what-do-you-do.aspx

Givinostat Early Access Programme

Description: Information about the Givinostat Early Access Programme at Evelina London, for children with Duchenne muscular dystrophy (MDM).
Url: /resources/patient-information/givinostat-early-access-programme.pdf

Having an exchange blood transfusion - Information for parents or carers of a child with sickle cell disease

Description: Information leaflet for parents and carers about their child having an exchange blood transfusion.
Url: /resources/patient-information/exchange-transfusion-information-for-parents.pdf

Having a simple (top-up) blood transfusion - Information for parents or carers of a child with sickle cell disease

Description: Information leaflet for parents and carers about their child having a simple (top-up) blood transfusion.
Url: /resources/patient-information/simple-top-up-transfusion-information-for-parents.pdf

lumps on the eyelid

Description: Information about surgery to treat lumps on the eyelids.
Url: /resources/patient-information/lumps-on-the-eyelid.pdf

Glaucoma surgery

Description: Information about having surgery for glaucoma.
Url: /resources/patient-information/glaucoma-surgery.pdf

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