WELCOME TO THE IRISH RAYNAUD'S & SCLERODERMA SOCIETY
Understanding your condition is the first step to conquering it
A New International Clinical Trial
An international clinical trial (Phase II, Proof-of-Concept,) is being undertaken by Celgene. Whilst Ireland is not participating in the trial, it is encouraging to hear of these developments. For further information, check out: http://www.clinicaltrials.gov/ct2/show/NCT01559129
Report on Medical Genetics
We have been circulated with information on the activities of The National Centre for Medical Genetics (NCMG) which can be downloaded in the document NCMG 5 year report. We would like to draw your attention to a particular element of this report in relation to staffing levels in clinical genetics in Ireland compared with other European countries. A resource table comparison for your information is here.
This is of particular importance to many who may engage with the clinical genetics services that are currently poorly resourced leading to long waiting times for an appointment.
National Scleroderma Registry
Local Support Network Groups
Would you like to join a local group? We are setting up local patient support groups around the country, with Cork and North Dublin leading the way. The latest group to start is the South Dublin/North Wicklow group. Galway is in the pipeline!
If you would like to be part of a local group please let us know by email or by phoning 0818 363 999 (for the price of a local call anywhere in the country). We are planning to set up groups in other parts of the country so please let us know if you are interested