·

 
Specific Medical Care Needs for Porphyrics
 
Case Management for Home Infusion
http://www.cmrg.com/
 
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.html http://www.ttuhsc.edu/pages/neuro/ttep/terms.htm
 

Outreach Services
 
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
 

Porphyria Specialists
 
AMA Doctor Finder
http://www.ama-assn.org/aps/amahg.htm
 
Dr. Kenneth Astrin, PhD. - Mt. Sinai - Human Genetics
http://www.mssm.edu/genetics/

Dr. Joseph R. Bloomer, MD / University of Alabama /
Gastroenterology & Hepatology / Scientific Advisory Board of APF
http://www.health.uab.edu/show.asp?durki=18931
 
Dr. Attallah Kappas, Professor / Researcher Rockefeller University  NYC
Porphyrin Heme Biology - Heme Oxygenase
http://www.rockefeller.edu/labheads/kappas/kappas.html

Dr. Micheline Mathews-Roth, MD
Channing Laboratory  
Brigham and Women's Hospital, Boston/Harvard
http://www.channing.harvard.edu/roth.htm
 
Dr. WIlliam E. Morton, M.D. Ph.D [Porphyria Diagnostician]
http://www.ohsu.edu/som-PubHealth/Morton.html
 
Dr. Neville Primstone MD / Scientific Advisory Board of APF
Metabolic Liver Disease - University of California - Davis  
http://medocs.ucdavis.edu/IMD/420B/esylabus/metabolic.htm

Dr. Shigeru Sassa /ROckefeller Laboratory/ Heme Biosynthesis
http://www.rockefeller.edu/labheads/sassa/sassa-lab.html

Dr. Shigeru Sassa, Associate Professor Rockefeller University NYC
Regulation of HemeBiosynthesis
http://www.rockefeller.edu/labheads/sassa/sassa.html
email: sassa@rockvax.rockefeller.edu

Dr. Kevin M. Smith DSc. - Porphyrin Chemistry - UC -Davis
www-chem.ucdavis.edu/groups/smith/index.html

Dr Herbert Bonkovsky
University of Connecticut
http://irondisorders.org/about/srb

 

Descriptions of  Porphyria Types

AIP (washington University-St. Louis)
http://www.neuro.wustl.edu/neuromuscular/nother/porph.htm
 
AIP - Acute Intermittent Porphyria -- Good Stats
http://www.icondata.com/health/pedbase/files/ACUTEINT.HTM

ALA-D
http://www.tzm.uni-giessen.de/unimar/englisch/ eng_pro.cfm?FB=20&Institut=284&lfd_Nr=26p
 
CEP - Congenital Erythropoietic Porphyria [CEP] - Gunther's Disease
http://medic.med.uth.tmc.edu/path/00000810.htm
 
EPP - Erthropoietic Protoporphyria [
http://www.emedicine.com/DERM/topic145.htm
 
EPP  - Protoporphyria
http://medic.med.uth.tmc.edu/path/00000809.htm

EPP  - Andre
https://members.tripod.com/~Alzuko/epp.htm

HCP
http://www.neuro.wustl.edu/neuromuscular/nother/ porph.htm#coproporphyria
 
HCP - Coproporphyria
http://medic.med.uth.tmc.edu/path/00000807.htm
 
HEP and PCT
http://medic.med.uth.tmc.edu/path/00000806.htm

PCT (Postgraduate Medicine)
http://www.postgradmed.com/issues/1999/04_99/rich.htm

PCT (Report by Matthew Sachs)
http://www.zevils.com/~matthewg/porphyria.html
 
PCT - Porphyria Cutaneous Tarda [PCT] - New Zealand
http://www.dermnet.org.nz/index.html
 
The Porphyrias -  UK
www.users.dircon.co.uk/~rosebud/anaesthesia/porphyrias.html#_1_21

Variegate Porphyria
http://www.neuro.wustl.edu/neuromuscular/nother/porph. htm#variegate
 
VP - Variegate Porphyria
http://medic.med.uth.tmc.edu/path/00000808.htm
 
VP - Variegate Porphyria (2)
http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?176200
 
VP - Variegate Porphyria - University of Virginia
http://wsrv.clas.virginia.edu/~rjh9u/varpor.html
 

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