Patient’s files, so as all contacts you may have with our medical advisors, are subject to privacy and medical confidentiality.

If you wish to find help either with RDB (medical advice, legal help, insurance problem and, in Belgium, the “mutuelle”), or with families showing the same pathology, four options are available:

1. You call RDB secretary’s office: RDB welcomes you on Thursday mornings, tel. number 0495 52 99 78. Mail address:

2. Your disease is listed in the general file, as association members or care institutions members. You may contact them, either directly or through RDB.

3. Your disease is included in the general file under the individual members section. Medical doctors of RDB can help you to contact those persons. These individual patients are joined or full members of RDB, but not members of any other association. Due to privacy, only the name of the disease affecting these persons is listed. You may contact them through the secretary’s office.

4. Your disease is not included in the general file. Please call RDB. A medical advisor will see if your disorder is indeed a rare disease, and if, with your approval, it can be included in the general file as “individual contact”. This may be useful for possible future links.

If several patients showing the same rare disease are concerned by points (2) and (3) above, RDB can make for the establishment of a new association, and bring help for the editing of legal statutes (this has been already done for a dozen of cases or so). Financial help for editing may be available.