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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)

Admission information for operation or planned tests

Description: Information that will help you to feel more ready for your child's operation or planned test.
Url: /resources/patient-information/admission-info-for-op-or-tests.pdf

MRI scan under general anaesthetic

Description: This leaflet aims to answer your questions about your child's MRI scan under general anaesthetic.
Url: /resources/patient-information/MRI-scan-under-general-anaesthetic.pdf

Preparing your skin before surgery using chlorhexidine gluconate 2% cloths

Description: This leaflet aims to answer your questions about how to prepare your skin before surgery. The purpose of preparing your skin
Url: /resources/patient-information/preparing-your-skin-for-surgery.pdf

Hirschsprung's disease

Description: This leaflet explains about Hirschprung's disease and the treatment options for your baby.
Url: /resources/patient-information/Hirschsprungs-Disease.pdf

Paediatric outpatient parenteral antibiotic therapy (p-OPAT) service

Description: Information about the paediatric outpatient parenteral antibiotic therapy (p-OPAT) service. It explains how the service works and what to do
Url: /resources/patient-information/p-opat-service.pdf

Anti-VEGF injections for babies with retinopathy of prematurity (ROP)

Description: Information for parents and carers about anti-VEGF injections. They are a treatment for an eye condition called retinopathy of prematurity
Url: /resources/patient-information/anti-vegf-injections-for-babies-with-retinopathy-of-prematurity-ROP.pdf

Botulinum toxin surgery

Description: Information about botulinum toxin for the bladder, including the benefits, risks and any alternatives, and what you can expect when you
Url: /resources/patient-information/botulinum-toxin-surgery.pdf

Your child's MRI under general anaesthetic

Description: Information about having a magnetic resonance imaging scan (MRI scan) with general anaesthetic.
Url: /resources/patient-information/your-childs-MRI-under-general-anaesthetic.pdf

Meet Evie who was named after our hospital

Description: A family have paid the ultimate tribute to our doctors and nurses by naming their daughter after Evelina London
Url: /about-us/news-events/2019-news/20190927-evie-cox.aspx

Nutrition in trichothiodystrophy

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

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