Advocacy and Hypoparathyroidism in the Twenty-First Century

  • James E. SandersEmail author
  • Jim SlineyJr.


As the medical community becomes more specialized and medical costs continue to increase, physicians divert thought toward matters of economics and maintaining the health of their medical practice and taking precious attention away from maintaining the health of their patients. It becomes necessary to find methods of bridging the gap between patients and medical providers so as to keep that relationship at the heart of medical care. Patients who have been diagnosed with any of the thousands of rare medical disorders are even more susceptible to being shuffled between specialists or left on their own to navigate a healthcare system strained for the resources to provide effective day-to-day care. It is therefore hard for the rare-disease patient to find a place to belong.

Patient advocacy groups, like the Hypoparathyroidism Association, Inc., have been able to help bridge the gap between physicians and patients. The structure and activities of the Association result in patients being more effectively managed for their hypoparathyroidism because of the service it can provide to patient and physician alike. The key lies in empowering the patient through education and support so that they can make better connections with the medical community tasked to care for them.

We will discuss the challenges facing the hypoparathyroidism patient and the role the advocate plays for them. The principles discussed herein can be applied to any of the thousands of other rare medical disorders and the people suffering with them.


Patient Advocacy Patient Advocacy Group Fellow Patient Rare Disease Patient Recombinant Human Parathyroid Hormone 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.


  1. 1.
    2014 (Online). Available: Accessed 18 Nov 2014
  2. 2.
    Nusynowitz ML (1973) Pseudoidiopathic hypoparathyroidism. Hypoparathyroidism with ineffective parathyroid hormone. Am J Med 725(7):677–686CrossRefGoogle Scholar
  3. 3.
    Nusynowitz (2013) Dr. Martin L Nusynowitz, Colonel, US Army, retired. Email to James SandersGoogle Scholar
  4. 4.
    Nusynowitz ML (1976) The spectrum of the hypoparathyroid states: a classification based on physiologic principles. Medicine 55(2):105–119CrossRefPubMedGoogle Scholar
  5. 5.
    Winer KK (1996) Synthetic human parathyroid hormone 1-34 vs calcitriol and calcium in the treatment of hypoparathyroidism. JAMA 276(8):631–636CrossRefPubMedGoogle Scholar
  6. 6.
    Sanders J (1994) Hypoparathyroidism Association Inc. [Online]. Available: Accessed 26 Aug 2013
  7. 7.
    Gilkey MB (2009) Defining patient advocacy in the post-quality chasm era. N C Med J 70(2):120–124PubMedGoogle Scholar
  8. 8.
    Cusano NE (2013) The effect of PTH(1-84) on quality of life in hypoparathyroidism. J Clin Endocrinol Metabol 98(6):2356–2361CrossRefGoogle Scholar

Copyright information

© Springer-Verlag Italia 2015

Authors and Affiliations

  1. 1.Hypoparathyroidism AssociationIdaho FallsUSA
  2. 2.Division of EndocrinologyColumbia University Medical CenterNew YorkUSA

Personalised recommendations