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Showing posts from July, 2016

The Dateline NBC documentary "Out of the Shadows" featuring EPP has been nominated for an Emmy Award!

The Dateline NBC documentary "Out of the Shadows" featuring EPP has been nominated for an Emmy Award!  The APF received this great message from an NBC producer:I'm excited to report that the show that you helped build, Dateline NBC's "Out of the Shadows," was nominated for an Emmy Award for Best Feature in a News Magazine. I can't thank you and the entire EPP community enough for all your help. The ceremony is in September. Fingers crossed!*The APF would like to thank everyone involved in the creation of this episode.
Visit this website to view the official announcement:http://www.nbcnews.com/dateline/dateline-has-been-nominated-five-news-emmy-awards-n614271
Watch the full "Out of the Shadows" episode here: http://www.nbcnews.com/dateline/video/full-episode--out-of-the-shadows-469336131891


"Remember....Research is the key to your cure!"

Don't forget to mark your calendars for the next APF Patient Meeting Indianapolis

Next APF Patient Meeting Scheduled in IndianapolisAPF member Nichol Kirby invites you to a Patient Education Meeting in Indianapolis, IN!  We hope you will take advantage of this opportunity to meet friends who share your experiences with porphyria.  There will be a presentation and a Q & A session for all attendees.Bring your friends and family!  We can't wait to see you all there!Saturday, July 30, 2016
11AM - 1PM EDT
IU Health Simon Cancer Center
Healing Garden
1030 W. Michigan St.
Indianapolis, IN 46202**Seating is limited so we ask that you please RSVP to Nichol at 317-749-7477 ornichol.kirby@gmail.com**"Remember....Research is the key to your cure!"

FDA accepts SCENESSE® clinical data package for NDA submission

FDA accepts SCENESSE® clinical data package for NDA submissionClinuvel prepares New Drug Application (NDA) for the treatment of erythropoietic protoporphyria (EPP) Executive summary: FDA concludes initial review of datasets on SCENESSE® in EPP FDA deems datasets satisfactory for submission of New Drug Application Pre-NDA meeting with FDA to be scheduled to discuss timelines and procedure Clinuvel will request rolling review of NDA under Fast Track designation Clinuvel to request Priority Review to shorten review from 10 to 6 months Clinuvel Pharmaceuticals [ASX: CUV; Nasdaq International Designation ADR: CLVLY; Xetra-DAX: UR9] today announced that the US Food and Drug Administration (FDA) has concluded an initial review of Clinuvel's clinical...
You may view the full Clinuvel announcement here:http://www.clinuvel.com/en/investors/news-publications/announcements/2016-announcements/fda-accepts-scenesse-clinical-data-package-for-nda-submission
This is great news for the EPP community! …

Porphyria Television and other Media

Porphyria Television and other MediaThe following is a list of Television, and Other Media that have featured Porphyria
Books and Papers“On Porphyria and the Aetiology of Werewolves” by L. Illis', 1963, paper published in Proceedings of the Royal Society of Medicine January 1964The Porphyrias by Geoffrey Dean, 1971Vampires by Nancy Garden, 1973"Porphyria, Vampires, and Werewolves: The Aetiology of European Metamorphosis Legends", paper by David Dolphin for the American Association for the Advancement of Science, 1985Porphyrins and Porphyria by Y. Nordman, 1986American Vampires: Fans, Victims, Practitioners by Norine Dresser, 1989Porphyria by Tammy Evans, 1997               Purple Secret: Genes, 'Madness' and the Royal Houses of Europe by John C. G. Rohl, 1999Porphyria, A Lyon’s Share of Trouble by Desiree Lyon Howe, 2004Royal Maladies: Inherited diseases in the royal houses of Europe by Alan Rushton, 2008Porphyria: The Ultimate Cause of Common, Chronic, & Envi…

EPP KIT? Do You have One? Get yours today

EPP KitTo help families and doctors manage EPP• $30.00 for US residents
Essential education produced exclusively for EPP patients. The Kit includes:EPP brochure and education. Important background information about EPP, management strategies, photosensitivity, and ways to avoid attacks.ER Information Form. At-a-glance sheet for ER personnel to record your essential admission information.List of leading APF EPP specialists and their contact information.Sun Precautions catalog, including medical solutions for sun sensitive people.Samples of light-protecting sun block and accompanying product information.Order by calling the APF Office: Toll free: 1.866.APF.3635.

Erythropoietic Protoporphyria (EPP) and X-Linked Protoporphyria (XLP)

Erythropoietic Protoporphyria (EPP) and X-Linked Protoporphyria (XLP)
Erythropoietic Protoporphyria (EPP) or ProtoporphyriaErythropoietic Protoporphyria is characterized by abnormally elevated levels of protoporphyrin IX in erythrocytes (red blood cells) and plasma (the fluid portion of circulating blood), and by sensitivity to visible light that is usually noticed in early childhood and occurs throughout life.  EPP can result either from mutations of the ferrochelatase gene (FECH), or less commonly the delta-aminolevulinic acid synthase-2 gene (ALAS2).  When EPP is due to an ALAS2 mutation it is termed X-linked protoporphyria (XLP), because that gene is found on the X chromosome. Protoporphyrin accumulates first in the bone marrow in EPP, and then in red blood cells, plasma and sometimes the liver. Protoporphyrin is excreted by the liver into the bile, after which it enters the intestine and is excreted in the feces. It is not soluble in water so is not excreted in the urine. EPP is t…

Nichol Kirby invites you to a Patient Education Meeting in Indianapolis, IN

APF member Nichol Kirby invites you to a Patient Education Meeting in Indianapolis, IN!  We hope you will take advantage of this opportunity to meet friends who share your experiences with porphyria.  There will be a presentation and a Q & A session for all attendees. Bring your friends and family!  We can't wait to see you all there!
Saturday, July 30, 201611AM - 1PM EDTIU Health Simon Cancer CenterHealing Garden1030 W. Michigan St.Indianapolis, IN 46202
**Seating is limited so we ask that you please RSVP to Nichol at 317-749-7477 ornichol.kirby@gmail.com**



"Remember....Research is the key to your cure!"

Porphyrias 101 NIH Read & Share

What are porphyrias? Porphyrias are rare disorders that affect mainly the skin or nervous system and may cause abdominal pain. These disorders are usually inherited, meaning they are caused by abnormalities in genes passed from parents to children. When a person has a porphyria, cells fail to change body chemicals called porphyrins and porphyrin precursors into heme, the substance that gives blood its red color. The body makes heme mainly in the bone marrow and liver. Bone marrow is the soft, spongelike tissue inside the bones; it makes stem cells that develop into one of the three types of blood cells—red blood cells, white blood cells, and platelets. The process of making heme is called the heme biosynthetic pathway. One of eight enzymes controls each step of the process. The body has a problem making heme if any one of the enzymes is at a low level, also called a deficiency. Porphyrins and porphyrin precursors of heme then build up in the body and cause illness. [Top] What is heme…