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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)

Metabolic disorders

Description: Clinical Guidance Paediatric Critical Care: Metabolic Disorders Summary This guideline is for staff regarding the management of inbor
Url: /resources/our-services/hospital/south-thames-retrieval-service/Metabolic-disorders.pdf

What do you do, Maxine?

Description: Maxine is the play service manager at Royal Brompton Hospital.
Url: /about-us/who-we-are/history/a-history-of-care/what-do-you-do/what-do-you-do-maxine.aspx

Suspected NSAID and paracetamol allergy investigation

Description: Information about non-steroidal anti-inflammatory drugs (NSAIDs) and how we investigate a possible allergy to them.
Url: /resources/patient-information/suspected-NSAID-and-paracetamol-allergy-investigation.pdf

Teenager returns to school thanks to pioneering post-COVID service

Description: A teenage girl has returned to school after receiving specialist treatment from the post-COVID service at Evelina London Children's Hospital
Url: /about-us/news-events/2022-news/25112022-post-covid-service.aspx

Schoolgirl prepares for GCSEs after UK first landmark surgery

Description: A schoolgirl is preparing for her GSCEs after undergoing life-saving, first of its kind surgery as a baby at Evelina
Url: /about-us/news-events/2022-news/20220614-schoolgirl-gcses-after-landmark-surgery.aspx

Teen athlete wins big at Transplant Games

Description: Rian Snell, 17, recently took home four gold medals from the British Transplant Games, followed by one gold and three bronze
Url: /about-us/news-events/2022-news/20220826-teen-athlete-wins-big-at-transplant-games.aspx

Meet a boy, buzzing with ambition, on an important trial at Evelina London

Description: A primary school boy is realising his dream of becoming a bee keeper following his participation in an international drug trial
Url: /about-us/news-events/2020-news/20200909-bee-loving-boy-buzzing-with-ambition.aspx

Schoolgirl is the first in the UK to benefit from a pioneering kidney treatment

Description: An innovative treatment provided by Evelina London has cured a girl with a rare kidney disorder.
Url: /about-us/news-events/2019-news/20190103-pioneering-treatment-for-a-rare-kidney-condition.aspx

Nutrition in Cockayne syndrome

Description: Nutritional advice for patients with Cockayne syndrome
Url: /resources/patient-information/nutrition-in-cockayne-syndrome.pdf

LHRH test

Description: Information about your child's Luteinising Hormone Releasing Hormone (LHRH) test.
Url: /resources/patient-information/lhrh-test.pdf

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