need urgent care? emergency porphyria support is Available
International EMERGENCY Porphyria Support
URGENT CLINICAL SUPPORT
Ipnet's Porphyria Clinicians Help Group
(for clinicians only)
Referrals must come from a healthcare professional. Patients and families cannot contact this service directly.
Ipnet's Porphyria Clinicians Help Group can be contacted to assist clinicians managing suspected or confirmed porphyria when expert porphyria advice is unavailable locally.
Contact:
Complete the IPNET referral form: https://ipnet.org/help-for-clinicians-webform/
Email: porphyriahelp@ipnet.org
Respond within a week
Support includes:
Email or video consultation
Laboratory testing advice
Interpretation of results
Treatment and management guidelines
PATIENT SUPPORT
gpac
(for Patients and Families)
Global Porphyria Advocacy Coalition can provide support and connections to national patient organizations for patients, families and caregivers.
Contact:
Email: admin@gpac-porphyria.org
Support includes:
Our team provides reliable guidance, evidence-informed information and support in navigating appropriate care pathways.
We are committed to responding promptly and ensuring you are directed to the most appropriate resources and services.
NON-URGENT CLINICAL SUPPORT
(for Clinicians)
For porphyria related questions about diagnosis, testing, treatment options or ongoing care
International Porphyria Network (IPNET)
+43 512 89043 600
American Porphyrias Expert Collaborative (APEX)
+1 301 202 2953