Rare Disease Nurse Network

THE RELIEF OF SICKNESS OF PERSONS WITH RARE DISEASES, IN PARTICULAR BUT NOT EXCLUSIVELY THROUGH THE PROVISION OF: A) SPECIALISED SUPPORT, ADVICE, INFORMATION AND ASSISTANCE DIRECTLY AND INDIRECTLY TO PEOPLE AFFECTED BY RARE DISEASES INCLUDING BUT NOT LIMITED TO THE ESTABLISHMENT OF A NURSE’S NETWORK TO PROVIDE SUCH SUPPORT. B) EDUCATION TO HEALTHCARE PROFESSIONALS WORKING IN THE RARE DISEASE ARENA AND THE GENERAL PUBLIC AND PROMOTE PUBLIC AWARENESS OF RARE DISEASES AND RELATED SYNDROMES, INCLUDING BUT NOT LIMITED TO THE SUBJECTS OF DIAGNOSES, POTENTIAL CURES AND TREATMENTS, AND THE SUPPORT REQUIRED BY PEOPLE AFFECTED BY RARE DISEASE. C) THE PROMOTION, SUPPORT AND ASSISTANCE OF RESEARCH INTO RARE DISEASES AND RELATED SYNDROMES, BOTH IN THE UK AND ABROAD AND THE PUBLIC DISSEMINATION OF THE USEFUL RESULTS THEREOF.FOR THE PURPOSES OF THESE OBJECTS, “PERSONS AFFECTED BY RARE DISEASE” INCLUDES REFERENCE TO PEOPLE WHO HAVE A RARE DISEASE (WHETHER DIAGNOSED OR UNDIAGNOSED), THEIR CARERS, FAMILY MEMBERS AND FRIENDS, CLINICIANS AND NURSES AND OTHERS WORKING WITH AFFECTED INDIVIDUALS OR AFFECTED DIRECTLY OR INDIRECTLY IN SOME CAPACITY BY A RARE DISEASE.