Should you suspect that you or a member of your family may have Epidermolysis Bullosa (EB) or another type of rare skin fragility, accessing the correct medical and psychosocial support can be vital in living your life to the full.

Often rare skin conditions can go miss diagnosed for many years, leaving the person living life in unnecessary pain and reducing the ability to engage in their life to their full potential.

Getting a correct diagnosis can allow the person to access the correct medical support, financial assistance and peer support which opens up many doors for families.

How do I get a referral?

  • Firstly, make an appointment with your GP.
  • Ask your GP to review the characteristics of your complaint.
  • If your complaint fits the diagnosis of skin fragility ask your GP to do a referral letter to :

Under 16

Referral letter needs to go to Dr. Fiona Browne, The Butterfly Clinic, Children’s Hospital Ireland, Crumlin, Dublin 12. The fax number for CHI is 01 4282651 and the EB nurse specialist’s are Annmarie Ormonde and Sharon Foley.

16 yrs +

Referral letter needs to go to Louise Monaghan, Dermatology Dept, St James Hospital, James Street, Dublin 8 or email Louise Monaghan.  The fax number for SJH is 01 4284158 and the EB nurse specialists are Eadaoine Redmond and Christine.

Northern Ireland

You will need your local Health Authority to complete an S2 (E112) form along with a referral letter from your GP.

If you need support at any point during this process, please contact [email protected] or [email protected] or call 01 4126924. Deirdre and Eve are our Family Support Team and will be happy to assist you in this process.