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

The COVID-19 pandemic continued throughout 2021, which began with another lockdown which impacted the charity as our shops were closed from January until mid-April, however despite only trading for eight months our retail operation, including government grants, delivered £1.7m net income in 2021.

Our fundraising activities were also severely impacted by the pandemic, particularly in the first half of 2021, however despite this we were able to run events later in the year and overall, we raised £960,000 through fundraising activity in 2021.

How we raised our money pie chart + figures


How we spend the money we raise

In 2021 our total charitable spend was £1.89m. We spent it in the following areas:

  • £687,000 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.
  • £485,000 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).
  • £366,000 on Public Education - initiatives to raise awareness of EB and to encourage people to support DEBRA.
  • £252,000 on EB Healthcare - includes funding specialist EB nurses for the NHS.
  • £95,000 on Respite Breaks – funding that enables DEBRA to continue to offer heavily subsidised holiday homes for members.

 Charitable expenditure 2021 pie chart


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.