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Showing posts from July, 2014

Volunteers Needed for AASLD and ASH Meetings

Volunteers Needed for AASLD and ASH MeetingsAmerican Association for the Study of Liver Diseases (AASLD) will host their annual meeting in Boston Nov 7-11, 2014at the Hynes Convention Center. More than 9,500 hepatologists and hepatology health professionals from across the nation and around the world will gather to discuss the latest in the field. The APF will have an exhibit booth to distribute porphyria medical information and promote porphyria awareness.  We need volunteers to help man the booth.  You will be meeting with the physician attendees, handing out educational literature, and sharing your porphyria experience with the doctors who come to the APF exhibit booth. If you live in the Boston area and are willing to assist us by manning the exhibit booth, please contact the APF.The American Society of Hematology (ASH) will host its 56th Annual Meeting in San Francisco, CA, December 6-9, 2014 at the Moscone Convention Center.  More than 20,000 hematologist and health professional…

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!

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, and in the following countries in Europe: UK, France,                                                      Switzerland, Germany, Italy, Sweden, Norway an…

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!"








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 AudienceThis 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 StatementThe goal of this activity is to explore the challenges involved across specialties in identifying and managing patients with acute porphyrias.Learning ObjectivesUpon competition of this activity, participants will be able to…

APF History

APF HistoryThe 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 he…

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…

Healthwell Foundation Offers Financial Assistance To Acute Porphyria Patients

Healthwell Foundation Offers Financial Assistance To Acute Porphyria Patients

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.....Rese…

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 AudienceThis 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 StatementThe goal of this activity is to explore the challenges involved across specialties in identifying and managing patients with acute porphyrias.Learning ObjectivesUpon competition of this activity, participants will be able to…

History of Porphyria

History of Porphyria
A Little Bit of History      1841 The term ‘porphyrin comes from the Greek word, porphyus, meaning reddish-purple. It was first thought that the reddish color of blood was from iron. One early scientist performed an experiment to prove that this was not the case. He washed dried blood with concentrated sulfuric acid to free the iron. He then treated it with alcohol and the resulting iron free residue took on a reddish purple color though it contained no iron compound     1844 - Gerardus Johannes Mulder determined the chemical composition of this purplish, iron free substance, which he named "hematin,"   He also illustrated that hematin took up oxygen.     1867 - J.L.W. Thudichum described the beautiful spectrum and fluorescence of these red porphyrins after he published his first book on the analysis of urine.     1871 - Felix Hoppe-Seyler crystallized hematin and described it’s spectrum.  He then demonstrated that the crystalline form differed from one …

Read about our new PTF DR Siddesh Besur MD, FACP

Siddesh Besur, MD, FACP The APF welcomes a new Protect the Future (PTF) trainee, Dr. Siddesh Besur. He is doing his fellowship in porphyria during July 2014-July 2015. Dr. Besur will be available for patients in the Charlotte, NC area. He completed the Transplant Hepatology Fellowship in Carolinas Medical Center/University of North Carolina in 2013-2014. Dr. Besur also was a Clinical Fellow Internal Medicine at Royal Glamorgan Hospital in United Kingdom during 2003-2004, and a Fellow in Internal Medicine in Senior House officer at University Hospital of Wales in United Kingdom during 2000-2003. A few of his Awards and Honors include:
• Master in-patient teaching physician -outstanding teacher award in 2012, 2013
• Faculty Investigator award  -Michigan State University-FAME in 2013
• Elected fellow of American College of Physicians (ACP) in 2011       
• American Society of Transplantation travel grant in 2013
• Presidential poster award -American College of Gastroenterology in 2012
• First …

About Porphyria!

About Porphyria!



Porphyria touches people of all ages, races, and incomes.  There may be one who suffers from Porphyria in your state, or even closer.  One thing I really appreciated was hosting an IN TOUCH meeting from the APF, they did most of the leg work for us.  I teamed up with another member who I had never met that had AIP, we discussed a central location, date time and place.  (Hint, if it's a smaller gathering check out at a hospital  setting- meeting room, if you explain what you want to discuss you have extras show up such as Nurses and Doctors) this is really a great way to explore the field of rare disease.  The American Porphyria Foundation sent out invitations to all those in the surrounding area and we had over 30+ people show up.  We supplied bottled water, tea, coffee and some fruit and a small cake and cookies nothing fancy.  I was able to spend time learning about others types of Porphyria and how it has affected their life.  Some who even ask me to share my st…