In the USA information should be available from DYSTONIA MEDICAL RESEARCH FOUNDATION 1 EAST WACKER DR CHICAGO ILL USA 60601-2098 TEL 312- 755- 0198 FAX 312 -321- 5710 if not at this address you could try contacting a movement disorder clinic or ask at an American Parkinson disease Association-APDA- Information and Referral centre good luck ARutherford