Scientist on a lab and the text Find out how DEBRA fundraises and the activities that its fundraising supports.

DEBRA is a national charity supporting people living with the genetic skin blistering condition, epidermolysis bullosa (EB), more commonly known as Butterfly Skin.

As we are a charity, we rely on donations to be able to do the work we do, which is providing care and support to people living with EB, and funding research into new treatments and ultimately cure(s) for EB.

We are very grateful to everyone who supports us, whether that be financially, giving us their time, or providing free advice and resources.

It is important to us that our supporters know we’re spending money wisely and for the betterment of the EB community, that’s why we commit to being open and transparent about how we are funded and where the money we raise goes.


How we raise money

In 2022, we generated net income of £3.06m from our fundraising activities and revenue generated through our charity shops.

Fundraising £2,282,000
Retail £653,000
Other £127,000

How we raised our money pie chart + figuresDEBRA charitable income.


How we spend the money we raise

In 2022 we spent £2.6m on charitable activities.

  • £970,000 on EB Community Support Initiatives - including funding our Community Support Team who provide information about EB and support to our members with issues which may impact everyday living, including benefits, employment, housing, school, emotional support, and referrals to specialist healthcare.
  • £630,000 on Research Projects – the objective of our research is to find treatments to improve quality of life for people living with EB, and ultimately to find cure(s).
  • £630,000 on Public Education - initiatives to raise awareness of EB and to encourage people to support DEBRA.
  • £290,000 on EB Healthcare - includes funding specialist EB nurses for the NHS.
  • £120,000 on Respite Breaks – funding that enables DEBRA to continue to offer heavily subsidised holiday homes for members.

How we spend our money pie chart + figuresDEBRA charitable expenditure.


The difference between the money we raise and the money we spend

The difference between our income and charitable expenditure is the money which is added into our reserves.

It is important to have reserves because these enable the charity to grow and develop but also to continue to operate in unforeseen situations like the COVID-19 pandemic where, through no fault of our own, we were unable to operate our stores for an extended period and our fundraising program was also heavily disrupted.


More information

For more information on what we do, and how we raise money and spend money, please read our latest Trustees’ Annual Report & Accounts.