Monday, July 28, 2014

Welcome Everyone!

Welcome all new ones. If you have any questions on need any assistance with materials and brochures please feel free to contact the APF for all your needs.
 1-866-APF-3635. 

Also, there are many opportunities to join research projects.

We also have a great blog to learn about the history, did you know and tips about each type of Porphyria.

 It's free so sign up today.http://porphyriafoundation.blogspot.com/

Come And Check Us Out!

Friday, July 25, 2014

Natural History Study goes International!

We are looking for patients to engage in a Natural History Study in collaboration with investigators from the American Porphyria Consortium to learn more about the symptoms and the treatment of patients with Acute Porphyrias.

You may qualify to participate in this study if you have the diagnosis of acute intermittent porphyria, variegate porphyria or hereditary coproporhyria and have experienced at least 3 acute attacks or have used panhematin, normosang, or other medicine to prevent attacks in the last 12 months. This study will not require you to take any new medication or treatments.

Please, contact the APF, or pm me here if you live close OR are willing do drive (the driving expenses will be reimbursed to you) to the following cities: Birmingham, AL; San Francisco, CA; New York, NY; Charlotte, NC; Galveston, TX; Salt Lake City, UT, a
nd in the following countries in Europe: UK, France,                                                      Switzerland, Germany, Italy, Sweden, Norway and Finland. ***


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

International Opportunity from the French Porphyria Association


International Opportunity from the French Porphyria Association



Our friends from the French Porphyria Association have a wonderful international opportunity. They are asking all EPP patients and their families, if you would like to participate in international exchange. A young EPP patient (20 years old) would like to come to the US in September. If you would like to be a host family, please let us know. The hosting involves only accommodation, all travel/food expenses are paid by a French party. In turn, a French family will welcome and accommodate you as well. Contact the APF, know if you are interested 713.266.9617.





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

 








Monday, July 21, 2014

The Longitudinal Study and the CME Course


                  The Longitudinal Study and the CME Course

The APF is sending out letters to all physicians from our data base about the Longitudinal Study of the Porphyrias. We also provide information about the CME (Continuing Medical Education) course (a free, internet-based activity). The title of the course reads: "The Management of Acute Porphyrias: Improving Diagnosis, Treatment, and Standards of Care".

Target Audience
This activity is intended for gastroenterologists, hematologists, emergency department physicians and nurses, hematologists, oncologists, obstetricians/gynecologists, primary care providers, dermatologists, endocrinologists, nurses, pharmacists, and other healthcare professionals who manage patients with acute porphyrias.

Goal Statement
The goal of this activity is to explore the challenges involved across specialties in identifying and managing patients with acute porphyrias.
Learning Objectives
Upon competition of this activity, participants will be able to:
  1. Detail the history, signs, and symptoms that point toward an appropriate diagnosis of acute porphyria
  2. Discuss the optimal methods for making the diagnosis of acute porphyria
  3. Evaluate acute and long-term porphyria treatment options

Authors & Affiliations:
Herbert L. Bonkovsky, MD, Owen M. Lander, MD, Gale W. Groseclose, RN, BSN.
If you would like us to send your doctor information about the current studies and a CME card, please let us know 713.266.9617.




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

Friday, July 18, 2014

APF History

APF History

The American Porphyria Foundation was formed in 1982 when Executive Director Desiree Lyon joined with another individual whose family was affected by porphyria to form a patient-run, expert-advised organization that would educate doctors and the general public about porphyria, raise funds for research, and advocate for better policy and patient care.
At the time, Desiree was a very sick young woman undergoing treatment as an inpatient at the National Institutes of Health in Bethesda, MD.  The physician-scientists treating her had explained that Acute Intermittent Porphyria was causing the horrible pain she felt, along with seizures and other neurological disturbances, immense swelling and rigidity of her abdomen, and other alarming and life-threatening symptoms.
As so many of us do when we are first diagnosed, Desiree sought more information about her condition, written in language she or any other person without a medical degree could understand.  She got permission from her doctors to walk herself and her IV pole down to the hospital’s medical library every day and began reading everything she could find on porphyria.  And from that simple beginning, this nearly-30 year old organization was born.
One of the APF’s earliest efforts was joining with other rare disease advocates to form the National Organization for Rare Disorders (NORD), and testifying before Congress in the same year in support of the Orphan Drug Act (1983). Panhematin®, which remains the only specific treatment for acute porphyria available in the United States, was the first drug to be approved under the ODA.
Since then, we have published materials on all the porphyrias for a patient audience; developed a comprehensive website and the educational DVD Porphyria Live; educated doctors at medical conferences, and through mailings and in-hospital seminars; helped thousands of patients in the U.S. and internationally find their way to diagnosis and treatment; served as liaison between the patient/primary care and research communities; and continually sought funds to improve research and training, diagnosis and care for the porphyrias.
"Remember.....Research is the key to your cure!"

Wednesday, July 16, 2014

Join the Registry

Join the Registry


Join the Porphyria Registry and LET THE GOVERNMENT KNOW THEY MUST PROVIDE FUNDING FOR PORPHYRIA RESEARCH!!!!!
To join the Contact Registry, click here to open a page that lists all of the rare disease consortia. Scroll down the page until you come to the Porphyria Consortium and click on your type of porphyria. You will then be asked to complete a simple form including information about the date of your diagnosis, if you know it. If you have copies of your initial diagnostic lab results, you may want to have them handy when you go to the registry website. 
Porphyria experts have created this National Porphyria Registry—a type of partnership between doctors and patients— as a way for those with porphyria to share information about their health and treatment so physicians can learn from their experience and use that knowledge to enhance diagnosis, treatment and eventually find a cure for porphyria.
It is the best means to prove that there are enough porphyria patients who want improved health care. If we don't speak up, we will be left behind when research funding is given. We DO NOT HAVE ENOUGH PEOPLE ON THE REGISTRY. Please join the registry.
Joining the Porphyria Registry is anonymous and free of charge. All data will be stored in a secure, computerized database. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval.
_________________________________________________
The registry is not linked to APF membership, but we hope you will join the American Porphyria Foundation too! So please consider joining the Contact Registry, and thank you for continuing to be a member of the APF.
Doctors who study rare diseases see a relatively small number of sufferers over many years of practice. This Registry will give a big boost to medical and scientific understanding of porphyria by bringing together information from patients all over the country.
If you need help enrolling in the registry contact our office toll free at 1-866-APF-3635.

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

Monday, July 14, 2014

Healthwell Foundation Offers Financial Assistance To Acute Porphyria Patients

Healthwell Foundation Offers Financial Assistance To Acute Porphyria Patients



Krista Zoset, President Healthwell Foundation
Krista Zodet, President
HealthWell Foundation

We are pleased to join forces with the American Porphyria Foundation to increase porphyria awareness and spread the word about resources available through the HealthWell Foundation for people living with porphyria. Since 2006, the HealthWell Foundation has provided copayment and premium assistance to eligible acute porphyria patients. Through our fully-automated grants process, patients are able to determine eligibility and apply online.  Patients also have the option to contact our hotline at 800-675-8416 to speak directly with a HealthWell representative. The HealthWell Foundation is an independent, 501(c)(3) charitable organization that provides financial assistance to insured individuals who struggle with high out-of-pocket medical expenses. You can learn more about the HealthWell Foundation by visiting us at www.HealthWellFoundation.org.

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