• Debra Nederland

Oproep Debra International

LIVING WITH EB AND WANT TO HAVE A SAY IN THE FUTURE OF EB RESEARCH?

DEBRA International is looking for people living with EB to help assess research projects.

Why we need people living with EB to be involved in assessing research projects.

Up to twice a year DEBRA International invites researchers to submit their exciting ideas for new EB research. We receive research fundingapplications outlining plans to understand more about EB, to develop therapies or to improve quality of life with EB. The researchers mustgive us details of what they plan to do, how they plan to do it and howmuch funding they require.

We have the help of many experienced and dedicated researchers to assessthese funding applications. However, we also want people with EB orcaring for someone with EB to consider the applications, from theperspective of their own expertise - life with EB. If you have EB or area parent or carer to someone with EB and would like to join our panel of'PATIENT REVIEWERS', keep reading...

A little more detail:

As a reviewer you may be contacted by DEBRA a couple of times per yearand asked whether you would be willing to review one or more projects.The estimated time to complete a review is 2-3 hours. Details ofresearch applications must be kept confidential and we will ask you tosign something to indicate that you understand the importance of this.

If you are interested in research, have good English and have a littlebit of time to give us, please click on the link below to fill out theform so we can get in touch with you.

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-------------------------DEBRA International is the umbrella organisation for a worldwide networkof national groups, working on behalf of those affected by the raregenetic skin blistering condition Epidermolysis Bullosa (EB).

DEBRA INTERNATIONALAm Heumarkt 27/1, 1030 Vienna, Austria www.debra-international.org [3] · Dit e-mailadres wordt beveiligd tegen spambots. JavaScript dient ingeschakeld te zijn om het te bekijken. · +43(0)1 876 40 30DEBRA International is a registered charity: ZVR 932762489

Daten met een ziekte of beperking

Sanne_de_Waard.jpeg

Voor gezonde mensen is daten vaak al spannend, maar met een ziekte, handicap of beperking kan het helemaal zenuwslopend zijn. Wanneer vertel je de ander dat je een stoma hebt? Zet je op Tinder een foto van je huidaandoening? En hoe reageren potentiële partners?

RTL nieuws besteedde hier aandacht aan. Drie vrouwen over hun ervaringen. Eén van deze vrouwen is Sanne de Waard.

Sanne heeft EB.

Lees verder

Debra Nederland 2017