International Porphyria Support Groups
United States
The American Porphyria Foundation
www.porphyriafoundation.com
4900 Woodway, Suite 780
Houston, TX 77056-1837Toll free: 866-APF-3635
Telephone: 713-266-9617
Fax: 713-840-9552
Office Hours:
8:30am-4:30pm, M-F Central Time
Europe
Rare Connect
www.rareconnect.org/en/community/porphyria
About RareConnect
Living with a rare disease can be an isolating experience. RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.
EPNET
www.porphyria-europe.com
WHAT IS EPNET ? The EPNET mission is to improve lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by the EU DG for health & consumers since 2007. We have established an effective network of specialist porphyria centres throughout the EU. Currently, EPNET consists of 33 EU specialist centres from 21 European and candidate countries that work together to develop an up-to-date consensus based approach to the management of patients and families with porphyria conforming to uniform standards. We also have associate members from Australia, Brazil, New Zealand, South Africa and the USA. Evidence from the last years programme shows that this network and its activities have a positive effect on the quality of diagnosis, number of patients diagnosed and treatment choices (shown through the collection of data, enquiries to the drug database and external quality scheme).
EPNET focuses on:
The American Porphyria Foundation
www.porphyriafoundation.com
4900 Woodway, Suite 780
Houston, TX 77056-1837Toll free: 866-APF-3635
Telephone: 713-266-9617
Fax: 713-840-9552
Office Hours:
8:30am-4:30pm, M-F Central Time
Europe
Rare Connect
www.rareconnect.org/en/community/porphyria
About RareConnect
Living with a rare disease can be an isolating experience. RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.
EPNET
www.porphyria-europe.com
WHAT IS EPNET ? The EPNET mission is to improve lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by the EU DG for health & consumers since 2007. We have established an effective network of specialist porphyria centres throughout the EU. Currently, EPNET consists of 33 EU specialist centres from 21 European and candidate countries that work together to develop an up-to-date consensus based approach to the management of patients and families with porphyria conforming to uniform standards. We also have associate members from Australia, Brazil, New Zealand, South Africa and the USA. Evidence from the last years programme shows that this network and its activities have a positive effect on the quality of diagnosis, number of patients diagnosed and treatment choices (shown through the collection of data, enquiries to the drug database and external quality scheme).
EPNET focuses on:
- Provision of information to patients (in their own languages) and healthcare professionals;
- Use of external quality assessment to develop quality standards for diagnosis and clinical advice;
- A web-based registry to collect data about the porphyrias to inform clinical practice and healthcare planning;
- Dissemination of information on safety of drugs.
