Our Community Support team works with the EB community and healthcare professionals to improve quality of life for people living with EB. We also help the wider EB community with information, guidance and advocacy for families and carers too.

We are committed to supporting people and families living in the UK who are affected by EB. Becoming a member is free and makes it easier to access our services.

Our Community Support Team are only a call away Monday-Friday 9am –5pm, you can find their details below. Outside of these hours you can email or leave a message and we will get back to you as soon as possible.

If you don't have a Community Support Manager or are not sure who it is, please contact us on 01344 771961 and select option 1, we will be happy to help.

You can also find out more about the services we provide and how we work with the NHS.

Click below to go straight to the relevant team member.

 

• Sabrina Khan - National Manager
• Alawiye Abdalla - Community Support Manager
• Amelia Goddard - Community Support Manager
• Nathalie Austin - Community Support Manager
• Rowena Hamilton - Community Support Manager
• Shamaila Zaidi - Community Support Manager

 

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Sabrina Khan

National Manager

Ensuring members have access to the support and information they need across all 4 regions of the UK

I have been with DEBRA for over three years, and I have really valued being able to meet many of the EB community. Prior to this, I worked in health and social care, working with other medical professionals, supporting older people with dementia and long-term conditions.

Knowing what help and support you are entitled to can feel like a maze at times, especially when you are facing other challenges. As a team we share our expertise and experience, as well as learning from member experiences, and do our best to understand people's needs to achieve positive outcomes. I feel privileged to have earned the trust and advocated for so many members. I hope to meet as many more members as possible.

When I am not working:

At the weekends, you’ll find me in the forest! I am lucky to live near some beautiful woodland and love running or walking with the dog and friends to spot deer and pick blackberries. After a long hike, there is nothing nicer than coming home to a cup of tea and chocolate biscuits – if the kids have left me any!

Phone: 07917 230191

Email: [email protected]

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Alawiye Abdalla

Community Support Manager

Area of special expertise - education and families

I first heard about DEBRA when I supported a young girl with Recessive Dystrophic EB (RDEB) at the school where I previously worked.

I have eight years of experience and knowledge of the education system, Special Educational Needs (SEND) plans and Education Health and Care Plans (EHCP) as well as having a good understanding of children and families needing support at school.

Currently I am helping members to complete Disability Living Allowance (DLA) and Personal Independent Payment (PIP) forms and supporting families during SEND/EHCP meetings at schools and colleges. I am also advocating for a member to ensure that she is suitably housed with the correct adaptations and equipment.

I can speak and write fluent Arabic and I recently helped a family to join an online member get-together by translating the Zoom instructions. The online get togethers are good fun and a great way to make new connections. I love meeting members this way.

When I am not working:

I practise Yoga, Pilates and weightlifting to benefit my wellbeing. I am an autism advocate; a meme enthusiast and I love to eat cakes and sweets but not bake them!

Phone: 07884 698212

Email: [email protected]

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Amelia Goddard

Community Support Manager

Area of special expertise - bereavement support

I have worked at DEBRA for just over a year. My background includes childcare and varied family support roles in both charity and local authority settings. Most recently I worked in a children’s hospice and enhanced my skills in listening therapy and support both before and after bereavement.

I have utilised my skills in bereavement work to help write the bereavement section on our website. I enjoy my role here at DEBRA, working with members and sharing the specialisms we have across the team to ensure they are supported to the best of our abilities.

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:

Aside from spending time with my family and caring for our pet praying mantis, I am also a keen gardener reaping the rewards from home grown vegetable crops. I am looking forward to trips to concerts and theatres once again.

Phone: 07920 231271

Email: [email protected]

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Nathalie Austin

Community Support Manager

Area of special expertise - welfare benefits across all ages

I started at DEBRA three years ago. Prior to DEBRA, I used to help families in my local community and specialised in community equipment. I worked with people to understand what adaptations were needed to increase their independence at home.

I have always practised a holistic approach in my previous roles, along with enabling and empowering people. This means that I look at what else might be affecting individuals and we work together to find solutions. I am determined to bring the best that I can to help the members I work with. I enjoy working in partnership with the medical teams and thanks to them I have learnt a great deal about EB.

Working with individuals living with EB has given me a great insight into what resilience is about.

When I am not working:

I enjoy walking with Happy (in the photo) especially on the sea front, watching him run after the seagulls but never catching one! I like reading about history in general. When I have some spare time, I also enjoy researching my family genealogy.

Phone: 07717 774553

Email: [email protected]

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Rowena Hamilton

Community Support Manager

Area of special expertise – housing

I started working for DEBRA in June 2018. Prior to working for DEBRA I had a 25-year career in social care, I have worked in a variety of different sectors including working with children, adults, the homeless, housing, domestic violence, vulnerable women and families.

My career and knowledge enables me to assist 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 over the past four years 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.

Phone: 07747 474051

Email: [email protected]

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Shamaila Zaidi

Community Support Manager

Area of special expertise - support grants, personal budgets & direct payments, carers’ assessments, mental health first aid

I joined DEBRA in November 2019. I have previously worked for various councils and charities developing services for people with disabilities, integrating them into mainstream services. I was involved in Direct Payment and Personal Budget government initiatives when they were originally introduced.

As well as working for DEBRA I am also an Independent Assessor for the Family Fund, assessing the eligibility of children/young people with disabilities for grants. During one of the family visits, I met a boy with a severe form of EB. Seeing how this condition affected him and his family, made me carry out research on EB and then I came across DEBRA. A few years later when I noticed the advert for CST Manager, I just had to apply, and here I am.

I am really enjoying the role and I have developed positive relationships with the healthcare teams and the EB community.

When I am not working:

I like to keep fit and enjoy going to the gym and for a run. I have two very young children that keep me mentally and physically active. I love to travel to different countries.

Phone: 07747 474454

Email: [email protected]

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