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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