Cushing’s Awareness Patient Day

Saturday, February 1st, 2014

San Francisco, California

Hosted by Kate Tully, R.N. and Katherine Waidner, R.N.

Cushing’s Patient Advocates – Corcept Therapeutics

Agenda and details to follow

The day will focus on endogenous Cushing’s, a condition caused by high cortisol in your body.

The day will not cover exogenous Cushing’s caused by steroids taken for various health conditions including asthma, arthritis or lupus.

Is Diabetes in Cushing’s Syndrome a Consequence of Hypercortisolism?

Eur J Endocrinol. 2013 Nov 19. [Epub ahead of print]

Is Diabetes in Cushing syndrome only a consequence of hypercortisolism?


C Giordano, Dipartimento di Medicina Interna e Specialistica (Di.Bi.Mi.S) Sezione di Endocrinologia e Malattie del Metabolismo, University of Palermo, Palermo, Italy.



Diabetes mellitus (DM) is one of the most frequent complications of Cushing syndrome (CS). Aim of the study was to define the changes in insulin sensitivity and/or secretion in relation to glucose tolerance categories in newly diagnosed CS patients.


Cross-sectional study on 140 patients with CS.


113 women (80 with pituitary disease and 33 with adrenal disease, aged 41.7±15.7 yr) and 27 men (19 with pituitary disease and 8 with adrenal disease, aged 38.1±20.01 yr) at diagnosis were divided according to glucose tolerance into normal glucose tolerance (CS/NGT), impaired fasting glucose and/or impaired glucose tolerance (CS/prediabetes) and diabetes (CS/DM).


71 patients belonged to CS/NGT (49.3%), 26 (18.5%) to CS/prediabetes and 43 (30.8%) to CS/DM. Significant increasing trends in the prevalence of family history of diabetes (p<0.001), metabolic syndrome (p<0.001), age (p<0.001) and waist circumference (p=0.043) and decreasing trends in HOMAβ (p<0.001)and Oral Dispositional Index (DIo) (p<0.002) were observed among the groups. No significant trend in fasting insulin, AUC INS, ISI-Matsuda and VAI was detected.


Impairment of glucose tolerance is characterized by the inability of β-cells to adequately compensate insulin resistance through increased insulin secretion. Age, genetic predisposition and lifestyle, in combination with duration and degree of hypercortisolism, strongly contribute to the impairment of glucose tolerance in the natural history of CS. A careful phenotypic evaluation of glucose tolerance defects in patients with CS proves useful for the identification of patients at high risk for metabolic complications.

[PubMed – as supplied by publisher]

Bone Complications in Patients with Cushing’s Syndrome: Looking for clinical, biochemical, and genetic determinants

Osteoporosis International, 11/14/2013  Clinical Article

Trementino L, et al. – Bone loss and fractures are a common complication of CS.

The authors investigate the role of gender, disease etiology, duration, and degree of hypercortisolism as well as the impact of glucocorticoid receptor (GR) polymorphisms on the development of bone complications in CS.

While GR gene variants as well as gender and disease etiology seem not to play a role, the degree and duration of hypercortisolism seem to be the major determinants of bone loss and fractures in this group of patients.

More investigations are needed to understand the real impact of these determinants on the development of bone complications in patients with hypercortisolism.

Read more

Brigham & Womens Hospital’s Pituitary Day 2014


In partnership with the Brain Science Foundation, the Brigham and Women’s Hospital Pituitary Neuroendocrine Center is pleased to present

Pituitary Day 2014

Saturday, March 29, 2013
8 AM – 5 PM
Bornstein Amphitheater
at Brigham & Women’s Hospital
75 Francis Street
Boston, MA

This conference is intended to unite patients, caregivers, family and friends with leading clinicians, researchers, nurses, and other experts to discuss the latest in pituitary diagnosis and treatment. All patients, caregivers, family and friends are welcome!

For more information, please visit or call Sarah Donnelly at 781-239-2903.

2nd Annual Patient Advocacy Summit


Come join us for our 2nd Annual “RARE Patient Advocacy Summit
to be held on Friday, September 20, 2013
at The Balboa Bay Club & Resort in Newport Beach, CA.

Register today!

Seating is limited for in-person participation.

Webcast registration available for those unable to attend in person.


From Symptom to Cure:  The Journey of a Rare Disease Advocate ~ Equipping Patients to Make a Difference

Join Global Genes | RARE Project for a unique and interactive educational experience at our 2nd Annual Patient Advocacy Summit on Friday, September 20, 2013.   There is no charge to participate in this event.

A rare diagnosis changes everything. It crashes plans and dreams, knocks you off your feet, and requires a continual investment of time and money as you try to determine what should be your next step.  The purpose of the RARE Patient Advocacy Summit is to help patient ADVOCATES become successful ACTIVISTS and to provide the discussion, insights and tools to move down this advocacy path, equipped and prepared.

The summit will offer practical advice, case studies and networking opportunities as we learn from one another.  The goal is to have patient advocates walk away with a better understanding of the challenges they will face and where they can be most effective in helping advocate for their disease/disorder.

Attendees will:
  • Learn how to get started: obtain 501c3 status, write grants, leverage PR effectively and utilize social media to spread your message.

  • Collaboration: Understand how to successfully work with other rare disease stakeholders, patient advocates, the FDA and other government entities.

  • Learn the importance of patient registries, the different types of registries and how advocates can support them.

  • Explore the role of foundations and advocates related to scientific discovery and drug development.

  • Gain a broad understanding of the scientific process, including diagnostic and research methodologies and collaborations with academia and industry.

At the end of this day-long event, each participant will gain perspective on the complexities and questions that need to be considered in order to become effective advocates for the rare disease patients and help advance therapies in the rare diseases we represent.

Who Should Attend:
  • Rare disease patients, caregivers, family members and friends
  • Patient advocates

Whether you are new to this rare disease journey or an experienced traveler, an individual advocate or part of an existing rare disease organization, you will gain value from this event.

Register today!


Hotel and Travel Information


Sponsor Information

To become a sponsor or for more information, please contact Nicole Boice.  We look forward to seeing you at this year’s summit.

 View videos from our 2012 event.

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