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The Protect the Future program was initiated in 2008 to train the next generation of experts as the majority of the porphyria experts at the time and in the coming years were set to retire. The Protect the Future program has successfully trained at least 30 porphyria experts who now contribute to cutting-edge porphyria research and clinical trials for new porphyria treatments. Training these young doctors has ensured they will preserve and build on the legacy of many experts who have recently retired where, otherwise, their knowledge may have been lost.
Rare diseases like porphyria affect about 8% of the world's population, and the education of physicians is focused accordingly. Therefore, most medical students and physicians prioritize common diseases over rare diseases because they have not been educated on or made aware of most rare diseases. This forces rare disease patients to the periphery, and finding doctors with the ability to recognize, test for and treat rare diseases is extremely difficult for them. While understandable, it directly harms patients and their families, heightening the social, psychological and economic stresses they incur, which negatively affects their overall health.
In the porphyria community, over time, many experts emerged participating in research and trials for new treatments. The APF was instrumental in getting the first porphyria treatment, Panhematin, approved by the FDA and designated as the first Orphan Drug for the Orphan Drug Act of 1983. With 95% of rare diseases not having any treatments, porphyria was ahead of the game. The APF recognized the importance of raising awareness and improving the education of not only patients and the general public but also new doctors and specialists to increase the quality of and impact on patient care. The aging population of porphyria experts and the growing population made it clear we needed more doctors to step in, replace the retiring experts and safeguard the expert knowledge accumulated for the benefit of patients.
The PTF program is now tackling the 15-year average delay to diagnosis and the lack of treating physicians, which has made access to proper diagnosis and treatment extremely difficult for patients who have to drive hundreds of miles or fly across the country just to see a doctor familiar with porphyria or rare diseases and has contributed greatly to the 15-year delay to diagnosis. Focusing on Primary Care Physicians (PCPs) and General Practitioners (GPs), as that is usually the first place patients seek help, is proving to be just as essential as training experts. Through our education programs, grand rounds and doctor packets, physicians can gain the knowledge they will need to care for the porphyria patient population now and for decades to come. Providing resources created by our Scientific Advisory Board of porphyria experts to PCPs and GPs paired with our Physician Referral Network consisting of over 6000 porphyria doctors facilitating consultation between doctors new to porphyria and experts has helped over 3000 patients and 500 doctors this year alone. Our goal of significantly reducing the 15-year average delay to diagnosis and increasing the number of doctors who can diagnose and treat through active education means that more doctors will be available to treat you in your area!
Protect the Future is a separate fundraising campaign with its own specific needs. We are seeking additional donations for the specific purpose of training new porphyria specialists and educating more physicians on porphyria.
We are all pulled in many directions for our donations, but rarely will we be presented with an opportunity to affect the course of our own lives and those of our children. Please consider a donation or fundraiser to support this important goal of enhancing porphyria physician education and reducing the excruciating 15-year delay to diagnosis, which causes the suffering of chronic symptoms patients waiting so long for diagnosis must endure.
Let’s work together to bring more educated primary care doctors and specialists into our lives. We are so very fortunate to have the few Porphyria experts who are presently in the field. Now, we can protect our own future by adding more doctors who have gained knowledge of porphyrias.
