European Reference Networks: developing a EUCERD opinion

Excerpt

The establishment of European Reference Networks as laid out under the Cross Border Health Care Directive (CBHCD) is a major opportunity for the rare disease community. There have been many successful networks for rare disease groups, but their establishment has been ad hoc and funding streams variable. Sustainability has been a major challenge. Although the assessment of the quality of these networks has not been systematic, nonetheless networks have succeeded in establishing important infrastructure including disease specific registries, shared tools such as tele-expertise and the production of disease specific guidelines and training pathways. …