Links
Porphyria specific sites:
International Support Groups
Australia Porphyria
Association Inc.
Porphyria Association Denmark
European Rare Disease Therapeutic
Initiative
Belgian website for pediatric hepatologists
British Porphyria Association
Danish Porphyria
Support Group
Finnish
Porphyria Support Group
French Porphyria
Center (includes
list of safe and unsafe drugs)
Drug
information database for nordic countries
Nordic Porphyria Support
Group
Nordic Countries
Drug information database
Norway
Porphyria Foundation
Swedish Porphyria Association
A patient's guide to Porphyria by Dr. Moore
Canadian Porphyria Foundation
Danish Porphyria Information
Dutch EPP Foundation
Italian Porphyria Association
www.porphyria-europe.com
South Africa Porphyria
Center
Spanish Porphyria Foundation
U.S.
EPP Foundation
United Kingdom: Cardiff Porphyria Service
Selbsthilfe EPP e. V.
(Germany)
Stowarzyszenie Porfiria Polska
(Poland)
Porphyrie Selbsthilfe (AIP) (Germany)
Porphyria Association Inc (Australia)
Porphyria Images:
EPP #1
PCT
Hands Group 1
PCT
Hands Group 2
Fluorescing Urine
(scroll down to the bottom)
PCT
#1
PCT #2
General sites:
American Society of Hematology
American Medical Association
BMJ—British Medical Journal
Disabilities Explanation
Disability Resource
Human Genome News
Intelihealth
Internet Drug Index
Journal of the American Medical Association
Med Help International
Medic Alert
Merck Manual of Diagnosis and Therapy
Mercy Medical Charitable Airlift
Merriam-Webster Medical dictionary
National Center for Health Statistics
National Institute of Health
Office of Rare Disease Research
Official US Government Site for
People with Medicare
Physicians Desk Reference
Pub Medical-National Library of Medicine
Research: Clinical trials available worldwide
Reuters Health
Medscape - Database of medical articles
Skin Care
Sun Blocks
Social Security Information
Tips on writing to your Senators & Representatives
U.S. Congress
U.S. Food and Drug Administration
Women Together
Resource Information:
Understanding
Clinical Trials—Information explaining
and describing clinical trials
Glossary—Terms
related to clinical trials
MedlinePlus—Authoritative
consumer health information
Genetics Home Reference—Consumer information
about genes and genetic conditions
NIH Health Information—Research
supported by the National Institutes of Health
PubMed—Pub Med
is the major site to use if you are interested in reading technical
papers about porhyria
ClinicalTrials.gov—If
you are interested in discovering what clinical research is being
conducted on poprhyria, go to this clinical trials site
Drug Information:
Cardiff University—Porphyria Drug Information
Patient Education Meetings
Read about the In-Touch Network
Read Gene Bennett's (CEP) biography
Helping hands:
Purchase products and help the APF at the same time! A percentage
of the sales from the following products are donated to the APF.
We appreciate your donations!
Tupperware
Purchase Tupperware
from Shelly Hill's online
store and receive a FREE Thank You Surprise
Gift with your order! 10% of the proceeds
will be donated to the APF. After you place your order, please
email Shelly at Ravish30@my.tupperware.com and
let her know that you were referred by the APF.
The Card Zoo
If you love unique handcrafted Greeting Cards & Stationary,
then shop at The Card Zoo!
iMoms
Real women. Real success working at home. Click here for more information.
Sensaria Skincare
Looking for more natural alternative to skincare & bodycare? Sensaria carries
more natural alternatives!
If you would like to include your business here and help
the APF by donating a portion of your sales,
please contact the APF at porphyrus@aol.com.
Donations can be made online through PayPal.
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