Main objectives

The early days

August 1998 - the first contacts began 16 years ago when a documentary broadcasted on the Flemish channel VRT related the story of Laurens, affected by dystrophic EB and who was then 8-year old.

November 1998 - a petition (227.000 signatures) is handed over to the national health authority (INAMI/RIZIV) with the aim at having the EB patients entitled to care reimbursements.

April 1999 - the first patients’ meeting takes place in Leuven.

November 1999 - the patient association, Debra Belgium vzw, is officially and legally constituted.

February 2001 - a royal decree is adopted by the Belgian government. It lays down the basis for the reimbursement procedure for care products used for the most severe EB forms.

Functioning

All members of the board are volunteers. 

In the beginning, the association was living with the members’ subscriptions and small gifts. Larger projects required more funds. Debra Belgium is now granted substantial funds from various service clubs and private fundraising events.  The Lions Club Bruxelles Millénaire is currently our major sponsor.

Members

Board of directors

The general assembly counts 12 members, out of which 6 are members of the board of directors who are mandated for a period of 3 years.

President: Stief Dirckx

Secretary and treasurer: Ingrid Jageneau

Other board members: Nirmala Huart, Daniel Bauwens, Annick Vangenechten

Stief has severe dystrophic EB. Ingrid and Nirmala have a child with EB Simplex. Annick has a child with junctional EB. Daniel has no family relation with EB and assists us as translator and fundraiser.

Families

The association counts +/- 100 families, representing all EB types.

Achievements since 1998

Advocacy

Belgium has a complex social security and health insurance policy. For the patients it is most of the time a labyrinth. We do not have a solution for all issues but could still realize some of our wishes.

What do we advocate for? 

Information

Specialized care for EB

Training for nurses

Multidisciplinary EB-center

Since 1 September 2004, Debra Belgium is financing part of the salary of two EB-nurses working in the neonatology department of the university hospital, Gasthuisberg, in Leuven. The aims of the service are to offer specialist nursing care to families and health professionals with particular emphasis on skin and wound care, feeding techniques, pain relief, genetic counseling and co-ordination of prenatal diagnosis. The children's nurse specialists are available or telephone advice or home visits where appropriate.

Their tasks consist in:

 

New since 2012: