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Showing posts from August, 2018

Porphyria Post

Holiday Office Closure The American Porphyria Foundation will be closed on Monday, September 3, 2018 and will re-open for normal business hours on Tuesday, September 4, 2018 in observance of Labor Day. Enjoy your weekend!
Take a look at our reminders below!
Safe/Unsafe Drug Questionnaire for the Acute Porphyrias (AIP,VP,HCP & ADP - VERY IMPORTANT The APF is collaborating with researchers to identify new safe and unsafe drugs. We need your help. Are you experiencing adverse effects with any of your new medications? If so, please let us know in the questionnaire below how it affected you. We will share these results with our team of renowned Porphyria experts/researchers. They are in the process of updating our safe and unsafe drug list for the acute porphyrias. Your donations will help us educate physicians about the dangerous effects of unsafe drugs. Please click on the link below for the Questionnaire.
Safe and Unsafe Drug Questionnaire
http://files.constantcontact.com/b87e847f601/4fe…

Acute Intermittent Porphyria: Symptoms, Triggers, and Other Factors Common symptoms of acute intermittent porphyria (AIP)

Acute Intermittent Porphyria: Symptoms, Triggers, and Other Factors Common symptoms of acute intermittent porphyria (AIP) 

AIP can cause many different symptoms that tend to come and go. When someone with AIP has symptoms, the episode is called an AIP attack. A person may have certain symptoms during one attack but different symptoms during other attack. Severe abdominal pain 
• Severe abdominal pain is the most common symptom of AIP. More than 85% of people have abdominal pain during AIP attacks. 
• The pain often lasts for hours or days. 
• The pain tends to begin slowly and become worse. 
• The pain tends to be all over and not in one small area. 
• The pain may start in the chest or back and move to the abdomen.
 • Pain medicines such as Advil® (ibuprofen) or Tylenol® (acetaminophen) usually don’t help much. This is because the pain is caused by nerves. Nausea or vomiting 
• Nausea or vomiting is common during AIP attacks. 
• People with AIP often have nausea or vomiting along with abdomin…

Porphyria Post

Porphyria Post Harvoni Study - PCT Do you have PCT? Are you interested in participating in research? Do you have Hepatitis C? If you answered YES to these questions, this is for you.
We need YOU for a clinical trial!
The purpose of this clinical trial is to assess whether Harvoni alone is an effective therapy in active PCT patients with Chronic Hepatitis C.
Who can participate?
• Adult patients with PCT who also have Hepatitis C
If you are interested in participating please contact Edrin Williams, Director of Patient Services at the APF office at 301.347.7166 for additional information. EPP Clinical Trials – Participants Needed! Are you ready to be a medical hero? A new clinical trial with an oral investigational drug intended to reduce phototoxicity in people living with EPP has begun. Don’t delay – contact the APF to learn more at 1-866-APF-3635 or porphyrus@porphyriafoundation.org
"Remember...Research is the key to YOUR cure!" Each Step Toward Finding an Effe

Porphyria Post

Porphyria Post #ApproveScenesse
The APF is fighting hard for Scenesse to be granted Priority Review status at the FDA. This is the fastest possible review process for a new treatment through the FDA. Scenesse has proven to be an effective treatment with nearly 6,700 worldwide SAFE doses implanted for the treatment of EPP. There IS no current FDA-approved treatment available for this extremely painful phototoxic disease.
As a TEAM we are much more effective.
Please use this Facebook frame to show your support for our cause and to help gain attention to the much needed Priority Review and approval of the EPP treatment Scenesse!
Here is the link to the camera effect.
www.facebook.com/fbcameraeffects/tryit/927609194092504/
Harvoni Study - PCT
Do you have PCT? Are you interested in participating in research? Do you have Hepatitis C? If you answered YES to these questions, this is for you.
We need YOU for a clinical trial! The purpose of this clinical trial is to assess whether Harvoni alone is…

Pub MD specials on each type of Porphyria Click on the link

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Select item 297058161. Brain perfusion defects by SPET/CT and neurostat semi-quantitative analysis in two patients with congenital erythropoieticporphyria. Frusciante V, Ferrari C, Totaro M, Valle G, Guida CC, Aucella F, Caputo P, Rubini G. Hell J Nucl Med. 2018 Jan-Apr;21(1):43-47. PMID:29705816Free Article Similar articles Select item 296417222. Genetic ancestry of patients withporphyriacutanea tarda in a country with mixed races: a cross-sectional study (Rio de Janeiro - Brazil). Succi IB, PĂ´rto LC, Domingues PMGDRP, Fonseca JCM. An Bras Dermatol. 2018 Jan-Feb;93(1):148-150. doi: 10.1590/abd1806-4841.20186666. PMID:29641722Free PMC Article Similar articles Select item 28884440