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Showing posts from March, 2018

Spread the WORD! Porphyria Awareness Week will be held on April 21-28, 2018

Porphyria Awareness Week will be held on April 21-28, 2018. We strive to dedicate this week to promote this group of rare diseases, reduce the stigma associated with porphyria through physician education, and provide support for those affected.

National Porphyria Awareness Week is the time for you to bring porphyria awareness to your local communities. We, at the American Porphyria Foundation, encourage You to help raise awareness and provide accurate information about porphyria where you live. The APF will help you accomplish your own activity by providing:

• Porphyria Brochures
• Porphyria Fact Sheets
• PorphyriaLive DVDs
• Information to gain media attention
• PowerPoint presentations,
• Porphyria Awareness week Graphics for Print, Web, and Social media (See downloads below)
• Press releases for local newspapers and television and Much More!
Contact Edrin at the APF office today to request information to be sent to you!

1.866.APF.3635 or email:

To get …

Hospital Opioid Shortages Cause Pain & Medical Errors

Hospital Opioid Shortages Cause Pain & Medical ErrorsMarch 16, 2018 By Pauline Bartolone, Kaiser Health News Even as opioids flood American communities and fuel widespread addiction, hospitals are facing a dangerous shortage of the powerful painkillers needed by patients in acute pain, according to doctors, pharmacists and a coalition of health groups. The shortage, though more significant in some places than others, has left many hospitals and surgical centers scrambling to find enough injectable morphine, Dilaudid and fentanyl — drugs given to patients undergoing surgery, fighting cancer or suffering traumatic injuries. The shortfall, which has intensified since last summer, was triggered by manufacturing setbacks and a government effort to reduce addiction by restricting drug production. As a result, hospital pharmacists are working long hours to find alternatives, forcing nurses to administer second-choice drugs or deliver standard drugs differently. That raises the risk of mi…



• Expert porphyria physicians and medical staff from 12 European countries were represented
• First PASS1 analyses: 13 months of data from adult EPP patients receiving SCENESSE® collected through the European EPP Disease Registry
• Unchanged safety profile of SCENESSE® as per SmPC²
• Clinical effectiveness: continuation on treatment by 99% of patients
• 61% of patients were treatment naïve (no previous exposure to afamelanotide)
• Over 16% of patients requested start of treatment in autumn and winter months
• Positive evaluation by physicians and patients on therapeutic benefit
• Requests for an afamelanotide formulation for the paediatric EPP population

Melbourne, Australia and Leatherhead, UK, 19 March 2018

CLINUVEL PHARMACEUTICALS LTD (ASX: CUV; XETRA-DAX: UR9; NASDAQ INTERNATIONAL DESIGNATION: CLVLY) today announced the results of the third European meeting on erythropoietic protoporphyria (EPP) held in Vienna, Austr…

EPP ~ Video Link From Clinuvel & Patient Member Story: Lauren Fabean



Lauren Fabean Type of Porphyria:  Erythropoietic Protoporphyria (EPP) My name is Lauren Fabean, and I am a sun-hater! I enjoy rainy days and feel an immediate sense of relief when I see "considerable cloudiness" in a weather forecast.  I was diagnosed with EPP at the age of 12. After enduring the worst reaction of my life while participating in a weekend softball tournament (I really hated playing softball, too!), my mom started seeking answers to what was happening to me and why, and the journey to my diagnosis began.
It took me a long time to get used to having EPP, and to learn what preventative measures worked for me. I also had to learn how much sunlight I could handle before a reaction set in. This was really hard. 23 years later, I still have days when I think I will be ok in a bit of sunlight, and the next thing I know I'm kicking myself for allowing a reaction to occur. 
This is what happens to me when I am exposed to too much sunl…

PCT Link & Story of John Gladding and PCT

Pictures of Cutenaous Types:
John Gladding
Type of Porphyria:  Porphyria Cutanea Tarda (PCT) Back in late 2012, I kept getting these random, tiny blisters. When I finally said something to my primary care doctor, she looked at me and told me to quit smoking and guaranteed that the blisters will go away if I did. I should mention that the day I started going to her, she hounded me about smoking. I didn't quit smoking, but I did cut back. A few months later, I got mad at her, so she sent me to a dermatologist. I had a blister (luckily) on my finger at the time of visit. He dug it out for a biopsy and suspected I had Porphyria Cutanea Tarda (PCT). I went back 2 weeks later, and he said it was confirmed that I did have PCT. He then advised me that I was to avoid direct sunlight at all cost, told me to get some Neutrogena sunblock SPF 100+ for sensitive skin, and to invest in long sleeve t-shirts, gloves, hats, and scarves. He advised …

“What I Wish I Knew”

“What I Wish I Knew”

When I was first diagnosed with Acute Intermittent Porphyria I was initially shocked.I struggled with the news and then I pulled myself together.I experienced many different emotions and often felt I would somehow make sense of it and get past it as soon as possible.I wanted to power through it and get my life back again.I closed myself off to lots of support along the way believing I shouldn’t ask for help or expose my “weaknesses.”When I look back on it know, I realize though I am coping the best way I know how, there were so many things I wish I had known that would have made it easier for me, and probably my family and friends to.
Knowledge is Power: What I wish I Knew “I’m not going to talk to anyone about my Porphyria,” I said Have you ever said that? “Where can I Find Information” I felt lost, scared, emotional, could my family really understand? Did they want to understand? Did they believe me?Did my Doctor even believe me? Now that I understand what care is needed…

Panhematin Patient Assistance Program

Panhematin Patient Assistance ProgramIMPORTANT NOTICE! If you have had problems receiving Panhematin treatment for any reason, please contact Desiree Lyon Howe, APF Executive Director, at . Please note that there is a patient assistance program that was developed to help patients who experience issues with access to treatment and offers comprehensive assistance for insurance related issues. Contact 1.866.209.7604 to access this program.
Below are a few problems that have been brought to our attention. We hope to help. Some people have been admitted to the hospital expecting treatment and received none. Some have been given only one vial instead of the usual 4. Some have been told the treatment is too expensive to order or that it is only for very serious cases. Some have standing orders for Panhematin and the orders were ignored. Others have heard that Panhematin will take too long to arrive, when it can arrive within 16 hours of ordering. Others have been told in the ER that t…

Do you really understand your Porphyria?

Hello and welcome to the American Porphyria Foundation.  Many of you are NEW to the APF! Welcome!!!  We are so happy that you are here to learn about Porphyria disorder and how really rare YOU are.

 Our information and links provided are backed by Worldwide Porphyria Experts!  There are many modern day sites and theories about Porphyria and social media groups that may offer personal help or experience.  Caution should be used when looking at information and considering the source.  Ask yourself, Who gave this information to me?  Where did I read such?  Is this a patient themselves, an advocate or a medical professional?  

The more Research and time you put into knowing more about your disease you will benefit and learn the most!  As you read and talk to different ones in the medical community be prepared by writing down in advance your questions?  
Why are you asking this question? 

 Do I personally experience this problem?  

Talk to your Dr! 

 Be brief and to the point! If your physician …

Meet Gregary Edwards with HCP

Gregary Edwards
Type of Porphyria:  Hereditary Coproporphyria (HCP) My name is Gregary Edwards, when I was 15 is when I noticed my first issues one morning I just could not get going, I thought I just had a bug and it would go away then I started to get electric shocks shooting all throughout my body in my muscles and my bones. I was getting so weak that I had to quit football as I could no longer keep up through the pain and weakness. I had good days and bad but I could never get back to what I was as a football player. After moving schools across country I felt better enough to go out for football again but that did not last. Things were fine for awhile but during my junior year things acted up again. The shocking came back so bad it would scare other kids in class with my jumping and jerking. It would bring tears to my eyes. One day during Trig class I zoned out and the teacher sent me to the office but I collapsed in the doorway for the first time ever. And for the first time ever I …