Rare Aware

Look beyond first impressions.

Over the years we have been privileged to meet many people who have each shared their personal experience of the impact rare disease has had on them and their family. This Rare Aware Gallery celebrates every person who has taken part in one of our rare-disease-specific exhibitions, each one encouraging viewers to look beyond first impressions.

To find out more an individual, click their image and read how their rare disease impacts them.

Alternatively, if you would like to search by condition please click here.

 

Jake

Angelman Syndrome

Amerah

Beckwith Wiedemann Syndrome

Rory

Congenital Nephrotic Syndrome

Amy

Cockayne Syndrome

Megan

Cockayne Syndrome

Thomas

Cockayne Syndrome

Hannah

Cornelia de Lange Syndrome

James

Coffin Lowry Syndrome

Matthew

Crouzon Syndrome

Ryley

Cystinosis

Isobel & Abigail

Downs Syndrome

Iwan

Dravet Syndrome

Jenson

Duchenne Muscular Dystrophy

Jack

Duchenne Muscular Dystrophy

Carson

Duchenne Muscular Dystrophy

Sabrina

Duchenne Muscular Dystrophy

Tyler

Ectodermal Dysplasia

Arlo

Edwards Syndrome

Katie-Ann

Edwards Syndrome

Lucy

Ehlers-Danlos Syndrome Type 3

Heidi

Ehlers-Danlos Syndrome Type 3

Phoebe

Classic Ehlers-Danlos Syndrome

Isabel

Encephalitis

Nina

Extreme Photophobia

Holly

Glutaric Aciduria Type 1

Alex

Glutaric Aciduria Type 1

Lizzie

Huntingtons Disease

Jonathan

Huntingtons Disease

Elisabeth

Hydrocephalus

April

Hurlers Syndrome

Maddox

Hypophosphotasia

Barry

Hypophosphotasia

Eddie

Infantile Spasms

Charlie

ITP

Callum

Kyphoscoliosis

Alex

Leighs Disease

Poppy & Ffion

Marfan syndrome

Charlie

MECP2 Duplication Syndrome

Lily & Willow

Mitochondrial Disorder - Leigh’s Disease & Mitochondrial complex 1 

Isabella

Moebius Syndrome

Katja

Moebius Syndrome

Barbara

Multiple Sclerosis

Amara

Multiple Complex Rare Conditions

Sebastian

Neonatal Adrenoleukodystrophy

Tyrese

Neuromyelitis Optica.

Lucy

Niemann-Pick Disease

Ryan

Ohtahara

Natalia

Patau Syndrome

Izzy

Pitt-Hopkins

Lachlan

Periodic Hypothermia

Grace

Periventricular Leukomalacia (+)

Niamh

Phelan-McDermid syndrome

Percy

Prader Willi Syndrome

Tristan

Russell-Silver Syndrome

Emily

Russell-Silver Syndrome

Eleanor

Sotos Syndrome

Tomos

Spina Bifida

Vinnie

Spinal Muscular Atrophy

Eric

Terminal deletion on 4to34.3 & double duplication of 16p13.2

Zakiyyah

Tyrosinaemia Type 1

Taye

Undiagnosed Condition

Olivia

Undiagnosed Condition

Sabah

Undiagnosed Condition

Mari

Wagr Syndrome

Faith

Wagr syndrome

Aidan

Worster-drought syndrome

Jacob

X-linked Hypohidrotic Ectodermal Dysplasia

Noah & Freddie

X-linked Periventricular Nodule Heterotopia

Myles

4H Leukodystrophy

Lois

5q15-23.1 deletion

Oliver

7p22.1