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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)

Parents get feeding tube tattoo to match their children

Description: Parents, Rebecca and Tom Golding, have tattooed images of a feeding tube on to their stomachs to support their two children
Url: /about-us/news-events/2022-news/20220805-parents-get-feeding-tube-tattoo.aspx

Batten disease service

Description: The Batten disease service cares for children with Batten disease - a group of rare inherited neurodegenerative disorders.
Url: /our-services/hospital/batten-clinic/overview.aspx

A schoolgirl can walk and talk thanks to care at Evelina London

Description: A girl who was locked in her body is now able to talk and take steps after receiving life-changing treatment
Url: /about-us/news-events/2020-news/20200104-anastasia-walk-talk.aspx

Evelina London lights up the London Eye

Description: An iconic London landmark was lit up in Evelina London's logo colours to celebrate their 150th anniversary, with the assistance of
Url: /about-us/news-events/2019-news/20191206-evelina-london-london-eye.aspx

Prednisolone

Description: Information about your child taking prednisolone.
Url: /resources/patient-information/prednisolone.pdf

MDT voice clinic

Description: Information about the Multidisciplinary (MDT) voice clinic.
Url: /resources/patient-information/MDT-voice-clinic.pdf

Sleep medicine referrals

Description: How to refer to our sleep medicine service.
Url: /our-services/hospital/sleep-medicine-department/referrals.aspx

Heart conditions

Description: About the different heart conditions we treat at Evelina London.
Url: /our-services/hospital/heart-services/treatments/conditions.aspx

Food challenges and supervised feeds

Description: Food challenges and supervised feeds are tests that are performed in hospital to see if your child is allergic to anything
Url: /resources/patient-information/food-challenges-and-supervised-feeds.pdf

Nutrition and dietetics service

Description: Our nutrition and dietitics service sees children with a wide range of weight, eating and complex specialist nutritional conditions.
Url: /our-services/hospital/nutrition-and-dietetics-service/overview.aspx

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