Skip to main content

Book News! Show your support and read a great book.





BULLETIN.......

APF  Patient Meeting In Atlanta Is Fast Approaching!


Saturday, December 8th 2012
10:00 AM - 12:00 PM
Hampton Inn Atlanta-Buckhead
3398 Piedmont Road NE
Atlanta, Georgia 30305
RSVP to Yvette at porphyrus@aol.com  or  call 1.866.APF.3635


For more information about the meeting go to: 
http://www.porphyriafoundation.com/news/APF-Patient-Meeting-Atlanta


We hope to see you there!

______________________
  
 BOOK  NEWS.........
"What Happened To Mr. Bennett?"
Daughter of a Man who lived with CEP writes a book about her father to bring awareness to Porphyria.
  Monica Bennett Firchow has written a book about her father , Gene Bennett, who had CEP.   It is a fascinating story of a man who lived life to the fullest despite the tragic impairment from CEP.  Disregarding Gene's severe photosensitivity and subsequent devastating skin damage, Gene was a rancher, pilot, sports and dog show photographer, parishioner, not to mention a wonderful friend, husband and father.  He was a man to be admired. 
  You can help Monica get attention for her book by visiting her website and reading about Gene @ http://genebennett.net, and clicking the "like" button at the top of the website. Please show your encouragement and support by visiting "What Happened To Mr. Bennett?"  fb page by clicking here.  Be sure to click the "like" button at the top of the page.          Your comments will be sincerely appreciated and are also needed to show the editor that people are interested in the porphyrias. 

Comments

Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

WHAT IS NEUROPATHIC PAIN?

What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…

GLOBAL PORPHYRIA ALLIANCE

GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: Porfyriforeningen.dk (Porphyria Association Denmark)Denmark: Porfyrier.dk (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…