Help the EB Community raise £250,000 before Rare Disease Day

Living a life free of pain – this is the wish of those suffering from EB (Epidermolysis Bullosa), a potentially fatal skin condition that causes constant pain due to unstoppable internal and external blistering.

There are around 500,000 people suffering from EB worldwide, and one in 227 of us carry a defective gene that causes the condition. There is currently no cure.

Read the full story

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£233,836.11

Target: £250,000.00

See our #FightEB stories These are the stories from the EB Community and why we continue to #FightEB

What your donation will fund

The money raised by everyone who takes part in the #FightEB appeal could help improve the health and wellbeing of people living with EB, fund specialist healthcare to provide high quality holistic care, and support pioneering research that is leading to improved treatments for this complex and distressing condition.

  • £10 could buy a soft cushion for use at a nursery
  • £25 could pay for one hour of enhanced EB nursing
  • £100 could help an EB sufferer travel to an appointment
  • £250 could provide an EB carer with new essential equipment
  • £500 could sponsor a family to pay for a subsidised holiday
  • £1000 could go towards helping a family with bereavement costs
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Raise free funds for #FightEB when you shop online via Give as you Live at over 4,100 stores, including:

The #FightEB Story

Living a life free of pain – this is the wish of those suffering from EB (Epidermolysis Bullosa), a potentially fatal skin condition that causes constant pain due to unstoppable internal and external blistering.

There are an estimated 500,000 people suffering from EB worldwide, and one in 227 of us carry a defective gene that causes the condition.

EB is more than what you see

In its most severe forms, EB is fatal; even in its mildest forms it can still cause lifelong disability and pain.

Blisters continuously form and have to be drained and dressed daily – a painful process that can take several hours.

The building up of scar tissue from repeated blistering can cause fingers and toes to fuse together, which can also lead to an aggressive form of skin cancer.

The overall impact of EB affects the whole body and psychological challenges are inevitable.

Learn how the EB Community is fighting back

Click through to watch and read stories from across the EB Community and learn how, despite having this debilitating condition, they don’t let EB defeat them.

The purpose of #FightEB

The main purpose of #FightEB is to make EB a well-known condition, giving a voice to those suffering and providing a platform for people to do something to help.

Donate today and join the #FightEB movement

The #FightEB campaign will run until Wednesday, 28 February 2018, coinciding with Rare Disease Day.

Together, we can beat EB

Romilly Harvey

I am donating because my niece died from EB at 4 weeks old! There has to be a cure found one day for all those butterfly children.

£5.00 + £1.25 Gift Aid

Amanda Snape

£10.00

Wendy Turner

£10.00

David Birtwistle

£5.00 + £1.25 Gift Aid

Nick Zahorcak

£50.00

10 fundraising campaigns so far..

Jen and Rich fighting EB
0%

£0.00

raised of £200.00 target

35km South Downs Walk
41%

£125.00

raised of £300.00 target

#FightEB so Ayaan can stay active with his friends
62%

£12,520.00

raised of £20,000.00 target

#FightEB to help Mason reach his full potential
78%

£15,600.00

raised of £20,000.00 target

#FightEB so Beata's son can have a better future
57%

£11,450.00

raised of £20,000.00 target

#FightEB so Oliver isn't stared at anymore
100%

£20,097.55

raised of £20,000.00 target

#FightEB so Heather doesn't have to suffer alone
77%

£15,550.00

raised of £20,000.00 target

#FightEB so Gabrielius can play like other kids
66%

£13,200.00

raised of £20,000.00 target

#FightEB to help James leave a legacy
69%

£13,865.00

raised of £20,000.00 target

#FightEB so future generations don't have to suffer like Heather
74%

£14,920.00

raised of £20,000.00 target

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Other ways to raise

18th

March

Fleet Half Marathon

Since the first event in 1982, thousands of runners have completed the race and the race has become the highlight of the year's sporting calendar in Fleet and the surrounding area.

Find out more

23rd

March

Tough Mudder - East London

In 2018 Tough Mudder is heading for the iconic Queen Elizabeth Olympic Park in Stratford. You’ll come for 5 kilometres worth of awesome obstacles that you’ll need a team to overcome but you’ll stay for the street food, craft beer and party vibes

Find out more

24th

March

Wild Mud Run - Midlands

Probably the muddiest event in the world of obstacle racing, more obstacles, more mud, less running. Voted obstacle race of the year. Osmaston manor, derbyshire, DE6 1LW.

Find out more

8th

April

Paris Marathon

Schneider Electric Marathon of Paris

Find out more

15th

September

DEBRA Sporting Challenge

Holland & Holland Shooting Grounds, Northwood, Middlesex HA6 2ST.

Find out more

15th

September

DEBRA Ladies at Sunningdale Heath

Join us there for a social day’s golf for women in support of DEBRA at what is still a hidden jewel of a course.

Find out more

17th

September

The Edinburgh Kiltwalk

The Kiltwalk is a unique Scottish charity event sponsored by Royal Bank of Scotland.

Find out more

17th

September

DEBRA Ladies Lunch

You will enjoy a sumptuous two course lunch at the Grand Central Hotel, Glasgow, which will include wine with some special treats during the afternoon.

Find out more

12th

October

Rough Runner - Manchester

Rough Runner is an obstacle course challenge, combining distance running with a variety of obstacles along the way, each inspired by game shows such as Total Wipeout, Takeshi’s Castle, Gladiators, and Fun House. Expect a 40m slide, giant pigeon battles, sweeper arms, big balls and yes, The Travelator!

Find out more

14th

October

Royal Marines Commando Challenge (5 & 10k Obstacle Race)

Taking place across Woodbury Common, near Exmouth, Devon, you will be taking on the real deal endurance training course, a course usually only tackled by the Royal Marines trainees themselves.

Find out more

22nd

October

The Great South Run - Southsea, Portsmouth

The Great South Run is the world's leading 10 mile running event and takes place on England's historic and scenic South coast. You can be one of 20,000 people who take part in this iconic running event. The Great South Run features live music en-route, great crowds and a goody bag (with medal!) for all finishers.

Find out more

22nd

October

Forest Ranger Cycle Ride - Staffordshire

The Wiggle Forest Ranger Sportive offers beautiful, undulating English countryside on a ride that will take you through the best and most scenic parts of East Staffordshire and Leicestershire counties, also encapsulating the most enticing cycling roads around The National Forest.

Find out more

28th

October

Survival Fun Zombie Run - Newbury

The ultimate thrilling zombie 5k run is coming! You need to survive not only our crazy 5k inflatable obstacle course but at the same time, evade the Zombie apocalypse on the way to the finish line!

Find out more

4th

November

Wolf Run - Leicestershire

The toughest of all Wolf Runs, Winter Wolf 2017 returns to Stanford Hall. Designed for the hardiest of you as a demanding step up embracing the harsh bite of Winter.

Find out more

5th

November

Nottingham Wheeler Cycle Ride

In its debut year, we give you one last chance to get out for a spin before the winter 
truly sets in — and what better place to do this than along the brisk and wending byways of rural Nottinghamshire.

Find out more

11th

November

Nuclear Races Essex - Brentwood

Nuclear delivers award winning fun, tough, gritty obstacle races over varied, undulating terrain. Expect big obstacles, highly organised events and relentless amounts of mud.

Find out more

18th

November

Purbeck Hill-a-Saurus - Dorset

As the name of this sportive suggests, it’s all about hills on this ride-out – as you’ll take in the best of them atop the chalky cliffs of the historic Jurassic Coast in Dorset.

Find out more

3rd

December

Santa Run - London

Join London’s largest Santa Run with over 4,000 santa’s raising funds for over 1,000 different charities. Now in our 9th year we promise you a festive fun-filled day out and a free santa costume!

Find out more

Special thanks to our significant supporters