Un miembro del Equipo de Apoyo Comunitario ofrece consejos a la familia con una niña que tiene los brazos y las piernas vendados.

As well as funding research to find treatments and cures for EB in the future, DEBRA supports those affected by EB today. Our Community Support Team works with families and individuals at all stages of life, providing financial, emotional, and practical support and signposting. We provide grants to make it easier for our members to have the things they need to live better with EB. We offer our members subsided holiday homes as safe places to take a break. And we put on events that allow members to connect with each other.

There are many teams and projects at DEBRA that underpin this work and make it possible to provide this support. We try and ensure that all our work has members at the centre. Please use your lived experience of EB to influence the projects below and ensure that DEBRA is always here for you.

Los proyectos a continuación cambian a menudo, así que siga revisándolos.

 

 

Help us with our Pathways project

We’re improving and expanding all of our information, on our website and in our leaflets, that we use to support members at different stages of life. Whether you have 10 minutes or one hour, you could really help us! 

How to be involved

To help us make sure the information we provide to our members is relevant, complete, and as easy-to-use for as many members as possible, there are two ways you can help us:

  • Reviewing content: we are trying to find a team of members to review the work we are currently doing and to look over what we’ve already written. This will be sent via email, and we anticipate that each piece of information to review should take no longer than 15 minutes. You’ll be able to choose how many pieces of information you want to review, and even just one helps!
  • Join an online focus group: we have recently held 8 focus groups, looking at different pathways from accessing social care, mental health, employment and many others. We expect to be running more groups later in 2024, if you're interested in getting involved and discussing key life stages, sign up here joining a focus group. We will get in touch to let you know how to get involved and need a mix of members to take part, so you don’t need lots of experience in a certain area to take part. The meetings will be arranged at times that suit that majority of members joining and will be no more than an hour long.
 

Register your interest to get involved

  

Tell me more about the pathways project
We want to empower members to find the information and support they need at different stages of life more easily. The community support team have been mapping out different ‘pathways’ of support, covering lots of different topics that could be areas that affect our members at some point during their lives.

This could be so you know what to plan for and expect as you/your child starts and moves on in education. Or, it could be support and guidance if you are looking to start work or change jobs. Or finding what benefits you are entitled to at different life stages. Our Community Support Team will always be here for 1-2-1 advice and support for our members. But in addition to this, we are creating these pathways, so this information is easy to find on our website too.

 

Help us plan and design our flagship event – Members’ Weekend 

Every year we host DEBRA’s “Members’ Weekend”, out biggest and most popular event. It’s a chance for our members to get together each year to share news, experiences and support, and to meet other people living with EB. It’s also a chance for our members to meet specialists from the EB Community, the DEBRA team, and to hear about the latest news and research about EB. Fin de semana de miembros 2023 | DEBRA Reino Unido 

It’s essential that Members’ Weekend is as relevant and accessible to as many members as possible, so we need your help to design and plan it, whether or not you can attend yourself. We share as much as possible of the news and talks after the event online, so please help us make it relevant to you.

Please take five minutes to answer our key three questions about Members’ Weekend here, or send us your ideas GME@dhr-rgv.com  

  • What workshops/sessions/talks/specialists would you most like to see at Members’ Weekend?
  • What are the biggest challenges when attending Members’ Weekend? What ideas do you have that would help reduce these?
  • What is the best way for us to help you meet other members at Members’ Weekend?

 

Review DEBRA International’s leaflets 

DEBRA International – the central body of the international network of DEBRA’s around the world – produce information leaflets for people who are either living with or caring for somebody with EB, or for healthcare professionals working with people affected by EB. These are guidelines to show the sort of care and treatments that people living with EB should expect to receive.

As an EB expert by experience, you can review this information and provide DEBRA International with feedback that will improve those documents for everyone living and working with EB.

Get involved | DEBRA International (debra-international.org)

 

Conviértete en fideicomisario

Más del 50% de la Junta Directiva de DEBRA son personas con experiencia vivida de EB, ya sea que vivan con la afección ellos mismos o familiares cercanos y cuidadores. Siempre estamos buscando miembros que estén interesados ​​en ser parte de nuestra Junta o uno de nuestros Comités para ayudar a dirigir DEBRA y guiar las decisiones que tomamos. Buscamos una combinación de habilidades y experiencias de las personas en estos comités, pero no es necesario que haya desempeñado un cargo a nivel de directorio anteriormente. Su experiencia vivida en EB es vital para garantizar que mantengamos las experiencias de los miembros en el centro de lo que hacemos. 

Encuentra más información sobre nuestras como somos gobernados y como aplicar convertirse en fideicomisario