Louis'-story-pic---Rare-Disease-Day-2015

Louis is a 19 year old, ex-Great Ormond Street Hospital (GOSH) (http://www.gosh.nhs.uk/) patient who has Hunter’s Syndrome, a rare degenerative condition which is caused by a missing enzyme. To mark Rare Disease Day, Louis explains about his rare condition and how it isn’t stopping him living a full and exciting life.

Mela and her family

Five-year-old Mela was diagnosed with Aperts Syndrome, a rare craniofacial condition, soon after she was born and has undergone a number of operations at Great Ormond Street Hospital (GOSH). This year, Mela is gearing up for our 5k family fun run, RBC Race for the Kids, on Sunday 7 June. Want to join her? You can! Sign up today. Here’s Mela’s story.

Ezara-Mai

Ezara-Mai is 10-years-old and has a rare condition called juvenile dermatomyositis (JDM), which affects the muscles and the skin. Today, on Rare Disease Day, Ezara-Mai’s mum Lorna shares their story and tell us what it’s like to come to Great Ormond Street Hospital (GOSH) for treatment.

Woof-and-patient

Pop into Great Ormond Street Hospital (GOSH) and you’re bound to spot the yellow T-shirts worn by our volunteers. Whether they’re greeting families in reception, giving people directions or playing with children in the hospital’s restaurant, volunteers play a huge role at GOSH. Here, we meet one of our smallest and furriest volunteers, who spends time with children on the wards.

Model of the new Centre for Research into Rare Diseases in Children building

Earlier this month the redevelopment team held an event to gather feedback on plans for the hospital’s new Centre for Research into Rare Diseases in Children. Still at the planning stage, the new building will enable scientists and doctors to work together on the discovery of new and better treatments for children and young people with rare diseases.

Over 20 staff and parents gathered to assess how the plans will meet the needs of patients, families and carers. But what did they think?

Staff-BHD

We’d like to say a huge thank you to everyone who sported a horrid hairdo or wild wig on Friday to celebrate Bad Hair Day. Your crazy hair will help to make a real difference to the patients and their families at Great Ormond Street Hospital.

Kieran Sorkin new ears

Great Ormond Street Hospital is 163 years old today! To celebrate the hospital’s birthday, we’ve chosen four incredible and inspiring patient stories from the past year. Huge thanks to everyone who has shared their story with us.

Ellen, Sam and Anna are ready for Bad Hair Day

Great Ormond Street Hospital (GOSH) patients Ellen and Sam, and their little sister Anna, are helping us get ready for Bad Hair Day on Friday 13 February. Taking part is easy, wear your hair wild, take a selfie, share it with the hashtag #BadHairDay and text BadHair to 70007 to donate £3.

Steve-and-the-London-to-Paris-cyclists

Felix was diagnosed with a rare form of epilepsy and speech language impairment (SLI) at Great Ormond Street Hospital when he was six years old. His dad, Steve, tells us about their experiences at GOSH and why last summer he decided to cycle from London to Paris to raise money to support the hospital.

Bad Hair Day 2014

Bad Hair Day returns on Friday 13 February and this year it’s going to be bigger and badder than ever before. Taking part is simple, wear your hair wild or don a crazy wig, take a selfie, share it with the hashtag #BadHairDay and then text 70007 to donate £3 to help the children and their families at Great Ormond Street Hospital (GOSH). Easy! You can even nominate two friends to #daretoshare their own bad hair.

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