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About "Porphyria Educational Services" [PES]


      Porphyria Educational Services was established as a nonprofit educational and charitable organization. The sole purpose of Porphyria Educational Services is to promote and advance the knowledge of the disease porphyria and to provide educational materials and assistance to porphyria patients and medical care providers.

     As a part of this mission Porphyria Educational Services will try to provide the latest information available in respect to the various aspects of porphyria.
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An Open Letter from PES
Diana Deats-O'Reilly CEO

     Porphyria Educational Services has continued to grow and has many new friends. Continued generosity on the part of many has enabled PES to accomplish many services and programs.

     The PES UNSAFE DRUG LIST is the most frequently visited website page. More and more physicians and other medical professionals turn to this resource when prescribing pharmaceuticals for their porphyria patients.

     PES has been most fortunate with the full cooperation of six data gathering services regularly sending PES updated reports on various drugs and their contraindications and their cytochrome P450 action. From this PES has been able to combine all of the lists and included both the Generic as well as the Brand name of drugs.

     We have received more compliments on this service over the past year and PES has been most happy to provide this service to patients, pharmacists and physicians alike. We encourage porphyria patients to go to the website regularly before any clinic appointments or hospitalizations and print out a complete listing of Unsafe Drugs.

     The publication of the book, "Porphyria The Unknown Disease" first released in 1999 continues in popular demand by both patients and physicians alike. Requests for the book continue on a regular basis. We especially thank the medical community for their continued fine support of the book and for referring the book to their patients.

     For the first two years website visitors were able to read the "Weekly Bulletins" which were produced by the PES staff and guest contributors. Weekly readership continue to grow and many readers wrote to share that they found helpful information and often printed the bulletins off to share with their personal care physicians. The Weekly Bulletins were very successful.

     Beginning January 2001 the format was changed to monthly "Newsletters". In addition to the variety of themes offered by guest columnists, up-to-date drug information is also listed and from time-to-time other features will be offered.

     One of the joys of the bulletins and newsletters is the ever-growing list of medical professionals who take time out of busy schedules to share on some aspect of porphyria, it's treatments or other related subjects. We now have several specialists from the various medical services contributing to these publications.

     The PES Traveling Educational Booth continues to travel far and wide across the United States to various hospitals, medical conferences and a few nursing conferences, as well as a pharmaceutical workshop.

     There has been an increased awareness of the porphyrias within the growing medical community. Several medical schools have made contact with PES and requested materials or use of the Educational Booth. The booth which was well received in 1998 during its debut, is now in demand throughout the year along with a table for distributing the porphyria handbook.

     On a personal note, Porphyria as a disease, has become manageable. Preventive therapy, keeping an ever watchful eye for triggers, and avoiding such triggers spells "porph free" days and a wonderful quality of life.

     I wish that my own personal success will be your success. I feel that it is "high time" that all of us get answers and the medical care that we need.

     A cure does not seem anywhere in the near future, and realistically not in my lifetime, given my age, but decent medical care with knowledgeable attending physicians is possible and should be attainable for all. I am most fortunate and count my blessings because of the wonderful and knowledgeable primary medical caregiver I have!

     All gray clouds they say, have a silver lining! With porphyria being the "gray cloud", my silver lining is the beautiful people that I have met through porphyria. In sharing we each come to realize that we all have the same basic needs, desires, and the need for affirmation especially during the low points with porphyria. It is through these times I have been richly blessed by you, and I want you to know how much that really means to me. And to all medical care providers working with porphyria patients, we thank you a thousand times over for dealing with a complex and misunderstood disease.
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A PES Letter to Physicians


     Porphyria Educational Services [PES] has come to realize fully that physicians "do" want to know about porphyria. Physicians do take the time at conventions and workshop to visit the traveling porphyria educational booth.

     During the millennium year over 10,000 pieces of porphyria literature was distributed. at medical conventions, hospitals and by direct requests.

     We have valued the number of physicians who have helped with the ever growing number of medical information requests. We try our best to link patients with physicians who can best answer their specific porphyria needs.

      During the past year there has been a growing number of pharmacists which have contacted PES and have complimented us on the Unsafe Drug website which more are increasingly using in their pharmaceutical services.

     On a personal note, Porphyria as a disease, has become manageable. Preventive therapy, keeping an ever watchful eye for triggers, and avoiding such triggers spells "porph free" days and a wonderful quality of life.

     A cure does not seem anywhere in the near future, and realistically not in my lifetime, given my age, but decent medical care with knowledgeable attending physicians is possible and should be attainable for all. I am most fortunate and count my blessings because of the wonderful and knowledgeable primary medical caregiver I have.

     Porphyria patients all know too well that trying to diagnose any porphyria is like trying to find a "needle in a haystack". But you have and you will continue to do so as a committed medical professional.

     As porphyria patients, we know that you as primary care providers have patients with the "more traditional diseases", and so we understand why you are sometimes perplexed with us.

     Whether porphyric, care giver, or medical care provider, you deserve the all the help that you can receive in the treating of porphyria. This is a time of growing understanding of the disease, Porphyria......and all of it's complexities.

     During 2000 Ninety-seven percent of all monies received by the Porphyrin Press and Porphyria Educational Services was used totally for providing porphyria educational materials to porphyria patients, their families and medical care providers. Not one penny was spent for fund raising. Generosity by friends of PES has been most appreciated! A special thanks goes to you as physicians who contribute in order to help in porphyria education.

     Porphyrin Press and Porphyria Educational Services [PES] do not undertake any solicitations by phone, email, advertising, Internet, door-to-door, or by mail. All funding comes from the generosity of friends of the porphyria community and the medical community through their direct contact with PES.

     While PES has been deemed a 503-(c) nonprofit charitable organization, it has been the philosophy that if you provide a good service and the recipient is happy, generosity will flow forth, and it has. For this we are most grateful!
Diana Deats-O'Reilly AIP/PCT
CEO
Porphyria: The Unknown Disease

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Missions and Goals


     Porphyria Educational Services [PES] is a nonprofit, voluntary health organization dedicated to promoting lifelong porphyria education to patients, and to the caretakers and physicians of porphyria patients.

     PES has as its mission to provide educational services, promote advocacy, and at the same time support research toward a cure for the various types of porphyria.

     To accomplish its mission, PES energetically pursues the following program goals:

  • Increase public awareness and knowledge of the porphyrias, diagnosis and treatment
  • Promote and provide education and training for health professionals
  • Advocate for expanded support for medical research and education
  • Provide information and support to porphyria patients and their caretakers and medical providers
  • Support research toward a cure.
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