- To defend the patients’ rights and advocate for easy access to expert health care for all EB patients in Belgium.
- To stimulate contacts between Belgian patients
- to collect and disseminate correct and fair information for patients, families and health professionals.
- To provide specialized care through the' training of nurses specialised in EB and the creation of an EB multidisciplinary centre;
- To promote medical research to find a “cure” for EB.
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.
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.
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.
The association counts +/- 100 families, representing all EB types.
Achievements since 1998
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?
- Recognition of EB as a chronic and rare disorder.
- Reimbursement of health care expenses.
- To make the reimbursement accessible to all EB patients.
- Creation of a national EB-centre.
- Newsletters sent on a quarterly basis to EB families, sympathizers, health professionals; institutions (in Dutch and in French).
- General booklet presenting EB, in Dutch and in French: “een huid als vleugels van papier” and “une peau aussi fragile que les ailes d’un papillon”.
- School brochure since 2004 in Dutch and French.
- Website, including a forum, designed and mastered by our President and EB patient, Stief Dirckx.
- Annual meeting for the patients, their relatives and friends.
- International contacts:
- attendancy to international congresses and workshops;
- contacts via e-mail and social media with collegues worldwilde;
- 23-26 October 2008: Debra Belgium hosted the International Debra Congress; under the Patronage of Her Royal Highness Princess Mathilde; 29 countries.
- Partnerships with other patients associations and platforms in Belgium:
- Trefpunt Zelfhulp, Leuven
- VPP: Vlaams patiëntenplatform
- LUSS: Ligue des Usagers des Soins de Santé
- RaDiOrg.be: Alliance Rare Diseases Belgium
- Eurordis: European Alliance Rare Diseases
- Office: by Ingrid Jageneau from home office, for phone contacts; e-mails, correspondence.
Specialized care for EB
Training for nurses
- training days “EB Care Day” organized in 2001, 2002 and 2007 for nurses working at university hospitals as well as for home care nurses;
- Belgian nurses are attending EB courses in Birmingham and London on a regular basis;
- our EB-nurses are member of the international EB-nurses forum and attend the conferences organized by Debra International and EB-Clinet.
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:
- nursing the newborns with EB;
- offering immediate advice to staff in maternity hospitals following notification of a newly born baby with suspected EB;
- visiting the baby and family as soon as possible to offer practical advice and to facilitate early diagnosis by taking a skin biopsy when appropriate;
- offering follow-up visits on a regular basis until parents and community staff are confident in care and handling;
- accompanying the parents and helping them as well as the home nurses with day-to-day management;
- co-ordinating outpatient appointments and admissions to other clinical sevices;
- co-ordinating the medical discussions over EB;
- co-ordinating the multidisciplinary eb-clinics;
- offering on-line advice via e-mail exchanges to other hospitals and home situations;
- attending the annual Debra Belgium meetings and Debra International congresses.
New since 2012:
- EB-nurse for adults and organization of a regular multidisciplinary EB-clinic for adult patients.