Below you will find some questions that will answer any queries that you have, but if not please do get in touch with the team. There is plenty of great information on the resources page [LINK] so make sure you check there too.


What is the process behind setting up a Group?

Once you submit your details using the online form, one of the team will be in touch to talk you through the formalities (nothing scary) behind setting up the Group so that you fully understand any commitment. Once you are happy with this, your DEBRA contact will help map out your first year as a Friends Group and assist you in exploring your contact network and how they can support you. At the same time we'll get to work on producing your logo and letterhead, setting up your webpage with the content you provide and sending out fundraising materials so you're all good to go!

How much will you expect me to raise?

We won’t set you any strict targets or hold you to numbers, but having a realistic aim for each year can be very helpful when focusing on planning the entire year. Your Friends Group contact will be able to work with you to come up with realistic and achievable targets.

Can I decide how the money I raise is spent?

Absolutely. We think it’s really important for a Friends Group to decide where the money they work hard fundraising is spent. You can discuss with one of the team when setting up your Friends Group where you would like to focus your fundraising.

Why should I set up a group?

Setting up your own Friends Group will give you autonomy within your region. You will own the fundraising activities, being able to choose where you allocate your time and will deservedly take all the credit for a job well done! A Friends Group essentially gives the full autonomy of having your own charity, but you can use DEBRA’s administrative set up and experience, saving you the hassle!

How much commitment do you expect?

We completely understand that setting up a group can be a big commitment, particularly when lives can be very busy. When starting the group, we will talk through realistic plans for the first year, although this can always be reassessed at any time if you feel it is too much or you want to do more.

What if I want to stop fundraising?

Not a problem. We understand fundraising can be a big time commitment so any time you want to take a break, you can. We will leave everything as it is should you wish to start fundraising again at any point.

How will money be tracked back to my Friends Group?

The most important thing is communication with the team. If you can let us know as much in advance as possible that money is coming and who it is from (it may be from a school, a rotary club, a lions club etc.) then we can make sure it is correctly allocated to the group. We will also set up a dedicated JustGiving campaign page for the group so that fundraisers can set up online pages and you can easily keep track.

How will my area be decided?

We will sit down and determine with you the best place to draw up your region. The factors that will affect this will be proximity to other EB families and your connection to the area. Rest assured, your area will certainly be big enough to bring in significant funding to help #FightEB.

There is already a Friends Group in my area, what should I do?

Please do drop the team a message and we will be able to discuss this with you. It may be the group works best with two families and allows a greater or lower commitment from both sides.

How can I get assistance for my fundraising?

Just get in touch with your DEBRA contact who will be more than happy to help in any way they can.

Who will I be expected to approach for funding?

Whilst we don’t have a set list of who you absolutely must approach, we do recommend that you look into: rotary groups, lions clubs, local schools, masonic lodges, universities, local town/village festivals/fetes, local sports clubs and supermarkets. You will of course have your own networks and we do encourage you to explore these fully.

Will I be able to request extra resources when I need them?

Of course. There are always two members of the Friends Group team so one will always be on hand to help out with extra resources.

Will I be able to get my own branded resources?

Initially we will be able to provide you with a bespoke Friends of DEBRA logo, a letterhead template and custom banner roll. If the group is able to show fantastic commitment and fundraising then we would certainly be happy to discuss branded resources with you.

What if I want to make my own branded resources?

We understand completely that this is something you may want to look into. All we ask is that you double check with the team before submitting any orders so we can ensure it fits with the DEBRA brand and collectively we can make the biggest impact possible.

Do I need to have previous fundraising experience?

Not at all. We have several experienced heads in the fundraising team who will be more than happy to guide you through the finer details and setting up your fundraising calendar. Fundraising is incredibly creative and you will more than likely find you will bring lots of ideas to us!

How will you keep me informed about what I have raised?

In addition to a yearly report on the research you have chosen to fund (or a broad look at the research if you have decided not to restrict your fundraising) we will send out quarterly newsletters to all Friends Groups.