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Clinical Guidance

Urgent clinical advice

Dr Schulenburg-Brand can be contacted for advice on immediate treatment.

Routine clinical referral

A referral letter should be sent to Dr Schulenburg-Brand at the Cardiff Porphyria Service. 

Urgent sample advice

We are currently able to offer urgent porphyria investigations, in particular urine porphobilinogen measurement, if clinically indicated. Urgent testing must however be discussed with a clinician attached to our service to confirm the clinical reasons for urgency. Investigations that have not been agreed by this route will be measured in the next routine batch.

Telephone Advice

If you wish to discuss the management of a case, please phone 029 2184 6588 during normal office hours.

For urgent out of hours advice please contact the on call National Porphyria service on 02920747747.

Advice on laboratory testing can be accessed on 029 2184 3565 and genetic advice on 029 2184 2811.

Advice on safe drug use for patients with porphyria and a list of safe drugs can be accessed via the Welsh Medicines Information Service or phone 029 2184 2251.

A list of safe drugs can be accessed via Welsh Medicines Information Service.