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Showing posts from December, 2019

New Year

We wish you all a Happy & Healthy 2020

Why Join Research?

Have you ever been involved in Clinical Studies or an observational study? Please give serious thought to joining. Please contact the APF 1.866.APF.3635 Why Join Research? There are two main types of clinical studies: clinical trials and observational studies. In a clinical trial, there is some form of treatment intervention. There is no intervention in an observational study, which is aimed at observing patients to better understand the long-term course of their disease. Clinical trials are used to test new treatments before they are approved for use by the FDA. This type of trial gives patients a chance to try out a new medication in its early stages. As with any experiment, the result of a trial is not known before its conclusion. Your participation could help demonstrate a terrific treatment breakthrough, or it could help scientists discover that a new treatment does not work after all. There may be some risk involved from the treatment in a clinical trial. Participating in either a…

How rare is RARE

disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. 

disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. ... In the EU, as many as 30 million people may be affected by one of over 6000 existing rare diseases.

Porphyria is just one of those ultra rare diseases in the form of Acute Hepatic Porphyria or Cutaneous type of Porphyria.

If you or a loved one suffers from this debilitating disease and need help please contact the American Porphyria Foundation @ 1.866.APF.3635 and you can learn form Experts Physicians from around the world.
porphyriafoundation.org

Informative Porphyria Post

Porphyria Post
Now Available on the APF Website - the 4th Quarter Newsletter The 4th Quarter APF newsletter has been mailed and is hitting doorsteps as we speak. In case you missed the latest copy, you can read it on the APF website. Read the APF Newsletter https://www.porphyriafoundation.org/apf/assets/file/public/newsletters/APF_Newsletter_4th_Qt_2019.pdf Holiday Shopping Made Easy!
Our very own APF store is your perfect solution for last minute gifts and stocking stuffers. The store has items to fit everyone's needs. There, you can find cozy tee-shirts, fun apparel Items - not to mention practical items everyone should have. By shopping at the APF Store, you can spread the holiday spirit, support a great cause and give to those you love. https://www.porphyriafoundation.org/apf-store/#!/Apparel-and-Merchandise/c/29641085/offset=0&sort=normal

It’s almost a wrap! Remember, when you finish your holiday shopping at smile.amazon.com, amazonsmile donates to American Porphyria Found…

Can porphyria cause mental illness?

Can porphyria cause mental illness? Acute intermittent porphyria mimics a variety of commonly occurring disorders and thus poses a diagnostic quagmire. Psychiatric manifestations include hysteria, anxiety, depression, phobias, psychosis, organic disorders, agitation, delirium, and altered consciousness ranging from somnolence to coma.
Porphyria: reexamination of psychiatric implications. - NCBI
https://www.ncbi.nlm.nih.gov › pubmed

About Porphyrias

About the Porphyria's.  Have you looked to see all the types there are?  Which one have you been diagnosed with?  What type of therapy or treatment is available for you?  Many of you are new to Porphyria and are trying to get a proper diagnosis.  This information comes directly from the APF.  If you need help in getting a diagnosis or have a questions on the different types please give the APF a call 1.866.APF.3635. www.porphyriafoundation.org

About Porphyria Porphyria is not a single disease but a group of eight inherited genetic disorders that differ considerably from each other. A common feature in all Porphyrias is the accumulation in the body of porphyrins or porphyrin precursors. Although these are normal body chemicals, they normally do not accumulate. Precisely which of these chemicals builds up depends on the type of Porphyria. The terms porphyrin and porphyria are derived from the Greek word porphyrus, meaning purple. Urine from some Porphyria patients may be reddish-pur…

LIVE FB WORLDWIDE JOIN US: Join Porphyria – American Porphyria Foundation to listen to Dr. Bruce Wang and ask your questions!

Porphyria Members: Don’t forget to set your alarm to 6:45pm What would you ask a porphyria expert if they were sitting in front of you?? You’ll have that opportunity on December 4, 7-8pm EST and December 5, 1-2pm EST! Join Porphyria – American Porphyria Foundation to listen to Dr. Bruce Wang and ask your questions! Link to join OPEN Group: https://www.facebook.com/groups/AmericanPorphyriaFoundation/

#GivingTuesday!

Today is #GivingTuesday! Help us today by donating now using the link below and sharing it with friends. Your contribution will make an impact, whether you donate $5 or $500. Every little bit helps. Facebook is matching up to $7 million in eligible donations made on Facebook during #GivingTuesday 2019 to support non-profit organizations. Thank you for your continued support. #GivingTuesday #AmericanPorphyriaFoundation Link: https://www.facebook.com/donate/541512656686810/

GivingTuesday

GivingTuesdayMonday, December 2, 2019
GivingTuesday is a global day of giving celebrated the Tuesday after Thanksgiving in the United States. Please consider supporting the APF on Tuesday, December 3rd.
When you support the APF, you are making a contribution to an organization that provides solid porphyria education, hope and essential support to those affected by porphyria. You can be proud to be an integral part of the help we provide patients on the road to accurate diagnosis, proper care, and hopefully someday a cure. This year our goal is set for 5000.00$ {The APF has 3,262 FB Members if each FB member donated 1.54 $ each we would make our GOAL!!!}Donations will be matched dollar for dollar on a first-come, first-served basis. Matching is available for any eligible US-based 501(c)(3) nonprofit that can receive donations on Facebook. Donations up to $250k per nonprofit and $20k per donor are eligible to be matched. We invite you to give Tuesday.
To Donate to the APF on Giving Tuesday…