Vive sonriendo frente a un mural con un arcoíris.Vie Portland vive con epidermólisis ampollosa simple (EBS).

Compartir historias es fundamental para nuestro trabajo. Pueden crear conciencia sobre EB y DEBRA entre el público en general e inspirar las donaciones financieras que necesitamos para ejecutar nuestros servicios y financiar la investigación. Ayudan a los trabajadores de la salud, investigadores, funcionarios públicos y políticos a comprender mejor la EB y, por lo tanto, nos ayudan a realizar los cambios necesarios para quienes viven con EB. Y las historias nos permiten compartir experiencias, triunfos y desafíos dentro de la comunidad EB, para ayudar a otros a vivir mejor con EB. 

No hay manera más poderosa de mostrar el impacto que puede tener la EB que escuchar directamente a quienes viven con la afección.

 

Comparte tu historia públicamente

Compartimos historias de muchas maneras: a través de nuestras redes sociales, podcasts, artículos de noticias, correos electrónicos o carteles de nuestra campaña, blogs, citas en publicaciones, charlas en eventos y reuniones con algunos de nuestros principales seguidores.

Pero entendemos que esta es una decisión personal y puede ser un paso desalentador. Nos gustaría trabajar con usted para contar su historia de una manera en la que se sienta cómodo.   

Inicie la conversación completando este formulario.

 

Comparta su historia

 

RARE Youth Revolution

estamos colaborando con RARE Youth Revolution, to amplify the voices of young people living with EB. 
RARE Youth Revolution has been created so that young people who are living with rare and complex conditions feel they have a safe space to share their experiences and can do so in a range of formats from article writing, podcasts, blogs, taking part in social media campaigns and video advocacy. Their vision for the future is to address the topics that children and young adults affected by rare conditions feel passionate about. 

We are looking for members Menores de 25 and living with EB to take part in creating a Teams video where you will discuss your experiences of living with EB in a Q&A format with another member.  If you would like to get involved in becoming a youth contributor to help spread awareness or would like to hear more, please reach out to GME@dhr-rgv.com, and we will put you in touch with RARE Youth Revolution and match you up with another member.
You can see some of the other videos they have created on their Canal de Youtube.

 

Hable con el nuevo personal y voluntarios de DEBRA

Help DEBRA volunteers, new staff and partners understand more about EB

DEBRA staff and volunteers have told us that meeting someone living with EB, at the start of their career with DEBRA, really helped them understand the importance of their role and what we’re trying to achieve here.
New partners that we work with similarly feel more motivated to help us raise funds and awareness of EB when they understand more about the condition.

By sharing your lived experience of EB by giving talks to friendly groups of DEBRA staff and supporters, you can help inspire and strengthen our relationships.  

If you’re a member and would like to find out more about giving a short talk about your EB, please fill in our ‘share your story’ form, y estaremos en contacto.