Who We Are
The PNA is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them.
PNA was founded in 1992 by a group of acromegalic patients in order to communicate and share their experiences and concerns. PNA has rapidly grown to become the world's largest and fastest growing patient advocacy organization devoted to the treatment and cure of pituitary disorders.
PNA is supported by an international network of the world's finest physicians and surgeons. Our goal is to reach every patient who may be forgotten, abandoned, or worse yet, undiagnosed after many years of suffering. We are doing this in three ways: (1) by providing public awareness programs and educational seminars, (2) by assisting the medical community in developing uniform standards for early diagnosis, surgery, radiation, pharmacological treatment and follow-up, and (3) by having interactive web sites and a referral program on these web sites.
To support, pursue, encourage, promote and where possible, fund research on pituitary disorders in a sustained and full-time effort to find a cure for these illnesses. The PNA will disseminate information helpful to the medical community, the public and to pituitary patients and their families on matters regarding early detection, symptoms, treatments and resources available to patients with pituitary disease.
The PNA believes there is strength in numbers. Since it is known that nearly a quarter of the world's adult population develops pituitary tumors in their lifetimes (22.4% actually), the need for joint cooperation and education is vital even though only a small fraction of patients are diagnosed with "clinically significant" tumors.
The aim of the PNA is to work in a close and cooperative way with the research, medical, governmental, and patient population for the common good.
As patients, we hope to cooperate in research and experiments to better the quality of life for all pituitary patients.
We do not believe one must play only the cards one is initially dealt; we believe it is possible to discard the bad ones and draw anew. The PNA offers services by phone and e-mail and can communicate worldwide with other patients or even specialists/doctors. We live by the motto, "patients first".
Entities of the United States government, such as the National Institutes of Health, as well as the private National Organization of Rare Diseases (NORD), the Endocrine Society, medical centers, hospitals, and private physicians now refer patients to PNA for membership, information, and peer-counseling.
Since its inception in 1992, the PNA has served more than 1,630,000 pituitary tumor patients, and lectured to or communicated with more than 35,000 doctors, nurses, and other professionals on six continents.
The PNA has had some of the world's leading scientists, endocrinologists, and neurosurgeons write informational booklets and brochures, in layman's language. These materials were produced by the U.S. National Health Service and are not copyrighted. Therefore, they are available to every nation's health services and to private organizations for translation and dissemination worldwide. The first four, on acromegaly, Cushing's, prolactinomas, and pediatric tumors, were originally produced in 1994, and recently updated in early 2013. More publications are being developed every year and we target new audiences for new issues at every opportunity.
The PNA distributes timely and pertinent information regarding new testing procedures, medications and treatment to thousands of members and interested individuals, via its e-newsletter, Highlights, now read in nearly 175 countries by physicians and patients alike.
The PNA, has an interactive global internet presence with our flagship website www.pituitary.org and our online store www.pituitarybooks.com. In addition, we have satellite sites www.raginghormones.org, www.acromegaly.org, and www.cushings.org. All of our websites offer visitors valuable, reliable information to help aid them in getting a proper diagnosis and answer the many questions that arise from those diagnoses. The PNA is active in social media, and promoting the spread of awareness with the overall goal of shortening the time between the onset of symptoms and the proper diagnosis.
In 1995 we published the first Pituitary Patient Resource Guide™, the only comprehensive reference guide for patients, their physicians, and their families. Over the years we have continued to provide patients with the information needed to obtain the best care available. In September 2013 we published the Pituitary Patient Resource Guide™ Fifth Edition as an eBook. This eBook format allows us to update more frequently and keep pace with the advances in pituitary medicine. Also in 2013, the PNA was instrumental in the publication of Pituitary Disorders: Diagnosis and Management and The Hormone Factor in Mental Health: Bridging the Mind-Body Gap. These two publications written from different perspectives are an essential addition to our Resource Guide. Pituitary Disorders: Diagnosis and Management is a publication written by some of the top pituitary experts in the world, this book is written for doctors who may be unfamiliar with pituitary disorders. It is an excellent guide to aid in the diagnosis, treatment and rest of life care for pituitary patients. The Hormone Factor in Mental Health: Bridging the Mind-Body Gap explores the effects of hormonal disorders on the mental health of patients and their families.
More publications are being developed every year and we target new audiences for new issues at every opportunity.