EB Community Support Team
Our EB Community Support Team works with the EB community and healthcare professionals to provide support services for families and individuals affected by EB.
We aim to improve quality of life for people living with all types of EB. We also provide information, guidance and advocacy for the wider EB community including families and carers.
By joining DEBRA UK as member, which is completely free, you’ll get full access to the range of EB community support services we offer.
Become a DEBRA UK member
How to get help from the EB Community Support Team
We have Community Support Area Managers covering each region of the UK, we are also a national team and support each other to combine expertise and manage workload effectively to ensure you get the support you need.
The team is here to support you Monday-Friday 9am-5pm, on the phone, virtually and in-person. You can:
- Email communitysupport@debra.org.uk
- Call our EB helpline on 01344 577689
- Call 01344 771961 (select option 1) for other support and referrals
The EB Community Support Team Leaders check the community support inbox regularly for messages and will allocate each referral / request received to one of the appropriate Community Support Managers available.
Outside of these hours you can and leave a message and a member of the team will get back to you as soon as possible (which is normally the next working day).
Find here the member of the DEBRA EB Community Support Team that covers your region.
Meet the DEBRA EB Community support team
Amelia’s area of special expertise is bereavement support.
Biography
“I have worked at DEBRA UK since 2019, my background includes childcare and varied family support roles in both charity and local authority settings.
I have utilised my skills in bereavement work to help write the bereavement resources on our website. I enjoy my role here at DEBRA UK, working with members and sharing the specialisms we have across the team to ensure our members are supported to the best of our abilities. I am very passionate about raising awareness of EB.
What I learn each day is the strength that our members have – how they overcome the challenges they face in daily life. I find it a complete privilege to be allowed to witness this.
When I am not working, I enjoy spending time with friends and family, visiting theatres and music events, and winding down in my garden”.
How to contact Amelia:
Phone: 07920 231271 or 01344 771961 (option 1)
Email: amelia.goddard@debra.org.uk
Holly’s area of special expertise is education and emotional support.
Biography
“I joined DEBRA UK in June 2022, prior to this I worked with children in a variety of roles, within the NHS, charity and private sector. Most recently I have worked as a nanny but missed working supportively with families which this role offers.
My background knowledge gives me a good understanding of supporting children and families within education, and I am also passionate about giving people the space and listening ear they need to offload when life gets hard. I have undertaken several listening skills courses and put these into practice through my previous job roles and look forward to being able to use these skills again.
I had an awareness about EB prior to this role due to a family member having EB, but my knowledge about EB has continued to grow in my time with DEBRA UK. I look forward to continuing my learning journey and supporting the people that I work with to the best of my ability.
When I am not working, I like to get out and walk my dog, get to the gym or watch a new TV series!”
How to contact Holly:
Phone: 07884 742439 or 01344 771961 (option 1)
Email: holly.roberts@debra.org.uk
Rowena’s area of special expertise is housing.
Biography
“I started working for DEBRA UK in June 2018, prior to this I had a 25-year career in social care where I worked in a variety of different sectors including working with children, adults, people experiencing homelessness, housing, domestic violence, vulnerable women and families.
My experiences and knowledge enable me to assist our members in many ways, including how to access the correct help within the housing sector.
I have had the pleasure of supporting our members and healthcare teams during my role with DEBRA UK and I am very passionate about the quality of service we provide.
When I am not working, I am a very sociable person and love spending time with my family and friends, I enjoy keeping fit and going to the gym, running and walking. I am known for taking on new challenges and in 2018 I trekked 150km across the Sahara Desert in aid of DEBRA UK.”
How to contact Rowena:
Phone: 07747 474051 or 01344 771961 (option 1)
Email: rowena.hamilton@debra.org.uk
Susan’s area of expertise is housing and benefits.
Biography
“I began working with DEBRA UK in July 2022. I had previously spent 17 years working in social care, specifically with 16–25-year-olds moving from local authority care to independence. I was a specialist housing advisor for this age group so have vast experience of housing legislation, complex needs, mental health support, homelessness, tenancy support, and helping people access benefits for the first time.
In my role I aim to support our members with housing support and access to benefits and ever since joining DEBRA UK I have loved meeting members, and colleagues from the EB healthcare teams.
When I am not working, I like to listen to live music, this is a passion of mine so you will find me rocking out at a concert or festival whenever I get the chance. I attend fitness classes mainly so I can keep mobile, and it supports my wellbeing. My children are grown up now, but we spend a lot of time together and that brings me a lot of joy. I also enjoy the beach or being near water even if it’s just for a walk”.
How to contact Susan:
Phone: 07570 313477 or 01344 771961 (option 1)
Email: susan.muller@debra.org.uk
Biography
“I started at DEBRA UK in July 2021 within the Fundraising and Events team as a Supporter Services Officer, where I supported the running of golf days and major events. I have now made an exciting move to the Community Support Team as a Community Support Area Manager. My background includes a degree in psychology and my employment history saw me work in elderly residential and dementia care homes as a care assistant and activities coordinator. I enjoy people centered roles and I am passionate about supporting the EB community and raising awareness of the condition.
I strive to use my skills to empower and support our members with any challenges they may face, as well as being a listening ear if needed. I look forward to developing positive relationships with the EB community and providing an excellent community support service.
When I am not working, I am a big animal lover and enjoy spending time walking my dogs, riding and caring for my two horses, and looking after a menagerie of exotic pets! I have quite the sweet tooth and love to make baked goods for friends and family”.
How to contact Jade:
Phone: 07919 000330 or 01344 771961 (option 1)
Email: jade.adams@debra.org.uk
Biography
“I joined DEBRA UK in April 2024. I come from a background of working with adults with disabilities for 10 years, firstly as a support worker and then with a specialist social work team. I aim to bring my experience of working with clients with a wide variety of support needs and understanding of the social and health care systems to DEBRA UK members in Scotland.
I’m passionate about providing both practical and emotional support, as well as working in partnership with other professionals to meet our members needs in any way we can.
When I am not working, I have just bought my first fixer upper home so am spending a lot of time DIYing and planning the next project in the journey. I also have a 6-year-old greyhound I adopted a year ago who keeps me busy with his antics – I especially love taking him for walks in scenic spots with friends and family at the weekend”.
How to contact Erin:
Phone: 07586 716976 or 01344 771961 (option 1)
Email: erin.reilly@debra.org.uk
Biography
“I started at DEBRA in July 2024. I had previously spent around 18 years (most of my working career) in education for children. However, my most recent position before joining DEBRA, was working for a service who support children and families with SEND.
I aim to bring my knowledge on SEND and my experience and passion to our members. I want to support families through their own personal journeys and advocate for you and your support needs.
When I am not working, I like to spend time with my 2 children, book and go on sunny vacations and watch documentaries.”
How to contact Gemma:
Phone: 07825 072211 or 01344 771961 (option 1)
Email: gemma.turner@debra.org.uk