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Showing posts from September, 2017

Porphyria Post

NICOLE'S CASTELLANO'S RUN FOR PORPHYRIA!
https://www.facebook.com/donate/120370012003528/2113251705367660/
Nicole Castellano went from living her life as a competitive athletic World Champion figure skater....to coping with three near death experiences related to her Acute Intermittent Porphyria. With proper treatment and a specialized diet, Nicole bravely rebuilt her life and has moved from a wheelchair to training for her first marathon! 26.2 is a lot of miles and we wish her the best of luck every step of the way.
Please support Nicole as she prepares to race in the Chicago Marathon on October 8th, 2017. Each mile will be a reminder of all she has done to overcome living with AIP.  And every step of her run will support all who live Porphyria.
WATCH THE VIDEO HERE:

To donate and cheer for Nicole visit:  https://www.facebook.com/donate/120370012003528/2113251705367660/ #TeamNicole #PorphyriaStrong

EVER WONDER HOW SCENESSE WORKS TO TREAT EPP? HERE IS AN EXPERIMENT TO HELP EXPLAIN.…

PLEASE SUPPORT NICOLE’S RUN FOR PORPHYRIA!

PLEASE SUPPORT NICOLE’S RUN FOR PORPHYRIA! https://www.facebook.com/donate/120370012003528/ Acute Intermittent Porphyria (AIP) is an ultra-rare disease that attacks the neurological system.  Nicole Castellano went from living her life as a competitive athletic World Champion figure skater….to coping with three near death experiences. With proper treatment and a specialized diet, Nicole bravely rebuilt her life and has moved from a wheelchair to training for her first marathon! Please support Nicole as she prepares to race in the Chicago Marathon on October 8th, 2017.
Each mile will be a reminder of all she has done to overcome living with AIP.
And every step of her run will support all who live Porphyria. The American Porphyria Foundation (APF) is dedicated to improving the health and well-being of individuals and families affected by Porphyria. To learn more about Porphyria please visit: http://porphyriafoundation.com To donate and cheer for Nicole visit https://www.facebook.com/donate/1…

Are YOU To BUSY?

Do you feel you are too busy? If so, you are by no means alone. “Everybody, everywhere seems to be busy,” reports the magazine The Economist. IN A 2015 survey of full-time workers in eight countries, many respondents said that they find it hard to meet the demands of both their work and their homelife. Causes included increased responsibilities at work or at home, rising expenses, and longer working hours. In the United States, for example, full-time employees report working an average of 47 hours a week. Nearly 1 in 5 claimed to work 60 hours or more! In another survey, this one involving 36 countries, over one quarter of the respondents said that they often felt rushed even in their leisure time! Children too can be affected if overloaded with tightly scheduled activities. When we constantly try to do more than time may allow, we can become stressed​—victims of what has been termed “time pressure.” But is it possible to live a more balanced life? What role do our beliefs, choices, …

IMPORTANT EPP MEMBERS

IMPORTANT EPP MEMBERS~
“We need your help in our campaign to approve Scenesse”

If you or someone you know is in the EPP MEDICAL 
community (Doctor, RN, or Other Medical Professional) and 
HAS EPP to please contact Kristen APF.  
Kristen@porphyriafoundation.org or call her 301.461.9889

PORPHYRIA POST: Scenesse, FDA, and an EPP campaign update…

PORPHYRIA POST: Scenesse, FDA, and an EPP campaign update…

CLINUVEL PROVIDES UPDATE ON SCENESSE® FDA FILING

A company announcement from Clinuvel Pharmaceuticals was released on September 19, 2017 regarding their submission for approval to the FDA for the orphan drugSCENESSE®which is used to treat Erythropoietic Protoporphyria. The announcement discusses both regulatory status and post-marketing safety data. 

Clinuvel is seeking Priority Review for this product. This is a regulatory status that would decrease the review timeframe from the traditional 10 months to 6 months. The FDA response to this request is expected at the start of the review period. 

Clinuvel closely monitors the safety profile of SCENESSE®under a European Post Authorization Safety Study (PASS) protocol. Clinuvel has agreed with the FDA that safety data from PASS will form part of the US post-marketing submission.

Please read the following complete announcement from Clinuvel:

http://clinuvel.com/investors/news/item/5…

Health & Happiness!

Happiness & health
The biology of emotion—and what it may teach us about helping people to live longer Could a sunny outlook mean fewer colds and less heart disease? Do hope and curiosity somehow protect against hypertension, diabetes, and respiratory tract infections? Do happier people live longer—and, if so, why? These are the kinds of questions that researchers are asking as they explore a new—and sometimes controversial—avenue of public health: documenting and understanding the link between positive emotions and good health. A vast scientific literature has detailed how negative emotions harm the body. Serious, sustained stress or fear can alter biological systems in a way that, over time, adds up to “w…

Calling: Research Research Research!

Research Volunteers Needed
RESEARCH: YOU ARE NEEDED! We are seeking patients to join our research studies. Get involved today!
Longitudinal Study: Participation in this study is very easy. It does not require you to travel to the research site. The study involves a review of your medical records, completing comprehensive questionnaires about your symptoms and quality of life, and providing blood and urine samples. You will be working closely with porphyria experts and researchers. The purpose of this long-term follow-up study is to provide a better understanding of the natural history of porphyrias, as affected by available therapies, and to aid in developing new forms of treatment. All Porphyrias
Panhematin Study: This clinical trial compares Panhematin to glucose to determine the effectiveness of Panhematin as treatments for acute attacks. AIP, VP & HCP Contact Edrin at the APF for additional information.
Harvoni Study for PCT: This clinical trial will assess whether Harvoni alone is an eff…

Porphyria Cutanea Tarda What it is! Know the facts!

Porphyria Cutanea Tarda Important It is possible that the main title of the report Porphyria Cutanea Tarda is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report. SynonymsPCTsymptomatic porphyriaporphyria cutanea tarda, type IIPCT, type IIporphyria, hepatocutaneous typeuroporphyrinogen decarboxylase deficiencyUROD deficiencyporphyria, hepatoerythropoieticuroporphyrinogen decarboxylase Disorder SubdivisionsNone General Discussion Porphyria cutanea tarda (PCT) is a type of porphyria in which affected individuals are sensitive to sunlight. Exposed skin shows abnormalities that range from slight fragility of the skin to persistent scarring and disfiguration. Due to fragility of the skin, minor trauma may induce blister formation. Areas of increased and decreased pigment content may be noted on the skin. Blistering of light exposed skin and increased hair growth are also characteristic.

PCT is caused b…