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Porphyria and Medical Links



ABC's Of Porphyria

 
The Porphyrias - In Depth Review
http://www-medlib.med.utah.edu/NetBiochem/hi6.htm

Clinical Manifestations, Diagnosis and Treatment of Porphyria
http://www.medstudents.com.br/metdis/metdis3.htm
 
Cytochrome P-450
http://www.mall-net.com/mcs/p450.html

Metabolic Basis of Porphyrias (Ensminger)
http://www.npac.syr.edu/users/ensmingr/porphtable.html

Metabolic Disorders - Porphyrias
http://www.medstudents.com.br/metdis/metdis3.htm

Names of Porphyrins
http://http://www-medlib.med.utah.edu/NetBiochem/hi2b.htm

NIDDK (Digestive Diseases) Porphyria Website
http://www.niddk.nih.gov/health/digest/
summary/porphria/porphria.htm


Painful Porphyria: Introduction to Deriree Lyon
http://pubs.acs.org/subscribe/journals/
mdd/v04/i04/html/MDD04DeptDiseases.html


Porphyria Pathology (Australia)
http://www.rcpa.edu.au/pathman/porphyri.htm

Porphyrins
http://www-medlib.med.utah.edu/NetBiochem/hi2.htm

Summary of Porphyria Syndromes
http://wsrv.clas.virginia.edu/~rjh9u/porphyria.html

Welsh Porphyria Website (Alana Adams)
http://www.dotpharmacy.co.uk/uporphy.html




Chemical Toxins & Porphyria
 
Biochemical  MS & Porphyria
www.faseb.org http://www.ummed.edu/dept/gastro/Fe-Porphyrin.html
 
Chemical Toxins 
http://www.epa.gov/edrlupvx/Tables/table2.NIEHS.html
 
Chelation Therapy
http://www.mall-net.com/mcs/chela.html
 
Cutaneous Heme Metabolis & Porphyrias
http://www.med.nyu.edu/Research/H.Lim-res.htmlhttp://www.ummed.edu/pub/m/mtaubert/FePorphyrin.html
 
Disorders of Porphyrin Metabolism - Dr. Grace Ziem MD
http://www.mcsrr.org/factsheets/porphyri.html http://www.mcsrr.org/factsheets/porphyri.html

Gulf War Syndrome
http://www.mcsrr.org/pressreleases/prgws94a.html
 
Heavy Metal Toxicity
http://www.ephca.com/metals.htm

Heme Biosynthesis
http://ethesis.helsinki.fi/julkaisut/laa/kliin/vk/ mustajoki/molecula.html
 
Heme Oxygenase [Dr. Attallah Kappas/ Rockefeller Laboratory]
http://www.rockefeller.edu/labheads/kappas/kappas-lab.html

Hexachlorobenzene and PCT
http://archderm.ama-assn.org/issues/v135n4/ffull/ded8027.html
 
Metabolic Basis and Characteristics of Porphyria
http://www.npac.syr.edu/users/ensmingr/porphtable.html
 
Metallopoprhyrins Chemical Table
http://www.porphyrin.net/Porphynet/porphy_metal/periodic_table.html

PCT & Carcinoma (Case Study)
http://www.cdc.gov/mmwr/preview/mmwrhtml/00000293.htm

Porphyrinogens,Porphyrins,and Porphyrias
http://nordx.mmc.org/testcat/procedure.asp?ProcedureID=30
 
Porphyria
http://www.mall-net.com/mcs/porphyria.html
 
Porphyrias and Haem Synthesis
http://www2.kenyon.edu/people/sharpm/welcome.htm

Porphyria and MCS (Thompson)
http://www.environmentalhealth.ca/w97porphyria.html
 
Porphyria Research [Dr. Sassa - Rockefeller University]
http://www.rockefeller.edu/labheads/sassa/sassa-lab.html

Porphyria and Sickle Cell Anemia (Manchester UK)
http://www.rcsed.ac.uk/journal/vol44_2/4420015.htm
 
Sick Buildings
http://www.mall-net.com/mcs/sickbld.html
 
Susceptability to Environmental Chemical [Dr. Wm. E. Morton M.D.
http://vest.gu.se/~bosse/Mercury/abs/morton95a.html

Toxic Hazards
http://www.atsdr.cdc.gov/toxfaq.html
 



Clinical Trials
 
Clinical Trials in Porphyria
http://rarediseases.info.nih.gov/ord/wwwprot/menu/dx06111.html
 
Clinical Study of Porphyria Patient on Long Term Prevention of Attacks
http://rarediseases.info.nih.gov/cgi-bin/rare-phy_show?file=pro13187.html
 
Porphyria- Clinical Trials in Preventing Cyclic Attacks in Women
http://rarediseases.info.nih.gov/cgi-bin/rare-phy_show?file=pro11885.html
 
Clinical Study of Heme Arginate in Porphyria
http://rarediseases.info.nih.gov/cgi-bin/rare-phy_show?file=pro13185.html
 
Phase I Clinical Trial in Porphyria Using Heme Arginate
http://rarediseases.info.nih.gov/cgi-bin/rare-phy_show?file=pro13191.html
 
Clinical Trials Database
http://clinicaltrials.gov/ct/gui/c/b 
 
Clinical Trials in Porphyria Enzyme Defects
http://rarediseases.info.nih.gov/cgi-bin/rare-phy_show?file=pro11888.html
 



Diagnostic Testing

24 Hour Urine Porphyria Testing
http://www.rcpa.edu.au/pathman/porphyr4.htm

ALA Urine Testing
http://www.rcpa.edu.au/pathman/5aminola.htm
 
Blood Cells and the CBC
http://www.neosoft.com/~uthman/blood_cells.html
 
Common Laboratory Tests in Liver Disease
http://cpmcnet.columbia.edu/dept/gi/labtests.html
 
Index of Worldwide Porphyria Labs
http://www.leeds.ac.uk/ifcc/SD/porph/labindex.html
 
Interpretation of Abnormal Porphyrin Test Results
http://www.metametrix.com/articles/artcl_por.htm#TABLE
 
Laboratory Diagnosis in Porphyria
http://medic.med.uth.tmc.edu/path/00000884.htm#Dx
 
Liver Function Tests
http://www.gastro.com/liverpg/lfts.htm

PBG Deaminase Red Blood Cell Testing
http://http://www.rcpa.edu.au/pathman/porphob2.htm

PBG Synthetase Red Blood Cell Testing
http://www.rcpa.edu.au/pathman/porphob3.htm
 
PCT [ Porphyria Cutaneous Tarda]- A Complete Overview
http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?176100

Red Cell Porphyrin Testing
http://www.rcpa.edu.au/pathman/porphyr3.htm
 
Toxic Metals and Chemical Induced Porphyrinuria
http://www.metametrix.com/articles/artcl_por.htm#TABLE

Porphobilogen Urine Testing
http://www.rcpa.edu.au/pathman/porphobi.htm
 
Porphyria Family Village - University of Wisconsin
http://www.familyvillage.wisc.edu/lib_porp.htm

Porphyrin Faeces Testing
http://www.rcpa.edu.au/pathman/porphyr2.htm
 
Dr. Robert J. Desnick - Mt. Sinai - Porphyria DNA Research
http://www.mssm.edu/genetics/

Dr. Kenneth Astrin - Mt. Sinai - Porphyria DNA Research
http://www.mssm.edu/genetics/ *astrin.html
 


Skin Biopsy for Porphyria
http://www.rcpa.edu.au/pathman/skin_bio.htm

Uroporphyrinogen Decarboxylase Red Cell Testing
http://www.rcpa.edu.au/pathman/uroporph.htm



Dietary Information for Porphyrics
 
Dietary Pyramid
http://www.nal.usda.gov:8001/py/pmap.htm
 
Dietary:  RDA [Recommended Daily Allowances]
http://library.thinkquest.org/10991/rda.html

Vitamins & Minerals  
http://library.thinkquest.org/10991/vitamins.html#vitamink

 



Drugs & Porphyria

Antimicrobial Agents in Porphyria
http://www.uct.ac.za/depts/mmi/antibiot/porph.html
 
Drug Toxicology
http://www.kumc.edu/AMA-MSS/study/pharm3_table_alphabetical.htm
 
Dr. Michael Moore's Website-University of Queensland
http://www.uq.edu.au/porphyria/
 
Drug Reaction Feedback
http://www.uq.edu.au/porphyria/porfdbk.htm
 
South African Porphyria Drug List
http://www.uct.ac.za/depts/mmi/jmoodie/porphtml.html#Classification
 
SSRI Use and Porphyria
http://www.geocities.com/HotSprings/3568/Dr_Preskorn.htm

 



General References
 
American Porphyria Foundation  [**$5.00 Access Fee]
http://www.enterprise.net/apf/
 
Canadian Porphyria Foundation, Inc.
http://www.cpf-inc.ca/
 
CIIN
http://biz-comm.com/CIIN/
 
Cure Porphyria Organization
www.cureporphyria.org/
 
Mayo Clinic Health Site
http://www.mayohealth.org/
 
Medscape
http://www.medscape.com/Home/Topics/multispecialty/multispecialty.html
 
National Library of Medicine
http://www.ncbi.nlm.nih.gov/PubMed/
 
PEGS - Australian Porphyria Group
http://www.crosswinds.net/~fevredream/
 
PorphyNet
http://www.porphyrin.net/Porphynet/porphy_facts/porphyria.html
 
PorphyNet  Porphyria Research
http://www.porphyrin.net/Users/porphsystems.html
 
Porphyria Research Company
http://www.porphyrin.net/Users/porphsystems.html

Tufts University
http://navigator.tufts.edu/
 
US National Library of Medicine
http://www.nlm.nih.gov/


 


 
Genetics & Porphyria



Genetic Study of AIP
http://ethesis.helsinki.fi/julkaisut/ laa/kliin/vk/mustajoki/molecula.html

Molecular Background of AIP
http://ethesis.helsinki.fi/julkaisut/ laa/kliin/vk/mustajoki/molecula.html

Structure of Porphyrins
http://www-medlib.med.utah.edu/NetBiochem/hi2a.htm
 
Genetic Disorders, Databases & Geneology
http://habitant.org/genetics.htm
 
Online Mendelian Inheritance in Man
http://www3.ncbi.nlm.nih.gov/Omim/

Understanding Gene Testing
http://www.accessexcellence.org/AE/AEPC/NIH/index.html
 
Your Genes, Your Choices
http://www.ornl.gov/hgmis/publicat/genechoice/index.html



Specific Medical Care Needs for Porphyrics
 
Case Management for Home Infusion
http://www.cmrg.com/
 
Hematin
http://www.integratedhealth.com/hpdspec/hema.html
 
Hematin
http://omlc.ogi.edu/spectra/PhotochemCAD/html/hematin.html
 
Medic Alert
http://www.medical-id.com/
 
National Patient Air Travel
www.PatientTravel.org
 
Ports & Picc IV Infusion
http://www.bardaccess.com/

 


Nerves & Neurology

CNS Involvement & Neuropathy
http://www.neuro.wustl.edu/neuromuscular/nanatomy/cns.html
 
Drugs Toxic to Nerves/Peripheral Neuropathy
http://www.ultranet.com/~smith/MedicalAlert.html
 
Evaluation of Peripheral Neuropathy
http://www.aafp.org/afp/980215ap/poncelet.html
 
Neuromuscular Porphyria Link
http://www.neuro.wustl.edu/neuromuscular/nother/porph.htm

Polyneuropathy Differential Diagnosis
http://www.neuro.wustl.edu/neuromuscular/naltbrain.htmlhttp://www.ttuhsc.edu/pages/neuro/ttep/terms.htm
 

Outreach Services
 
Americans With Disabilities Act:  An Overview
http://janweb.icdi.wvu.edu/kinder/overview.htm
 
Americans With Disability Act
http://www.usdoj.gov/crt/ada/reg2.html

Center for Patient Advicacy
www.patientadvocacy.org
 
Coping With Chronic Illness
http://victorian.fortunecity.com/cezanne/518/index.htm
 
Porphyria Family Village-University of Wisconsin
http://www.familyvillage.wisc.edu/lib_porp.htm
 
Social Security - Questions & Answers
http://www.nosscr.org/faqind.html
 
Social Security Disability Questions & Answers
http://www.nosscr.org/hallfaq.html#01