Cushing’s Awareness Challenge 2015

Posted on March 19, 2015 by MaryO

Latest posts from the folks who will be participating in this year’s Cushing’s Awareness Challenge.  Check them out!  (It’s not too late to add your own blog, either)

 

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Webinar: Psychosocial Aspects of Pituitary Disease

Posted on March 15, 2015 by MaryO

Jessica Diller Martino
Professor – History of Psychology
City University of New York

Register Now!

After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.

Date: Thursday, March 19, 2015
Time: 10:00 AM – 11:00 AM Pacific Standard Time

Webinar Description:

Please join us on March 19th for a webinar on a topic that is too often ignored: the mental health of pituitary patients. Jessica Diller Kovler, Professor in the History of Psychology at the City University of New York, will join us to discuss psychosocial aspects of pituitary disease.

Learn about the symptoms before and after diagnosis, which symptoms are observed in each type of pituitary dysfunction, and learn ways to cope and connect with others.

Presenter Bio:

Jessica Diller Kovler is a Professor in the History of Psychology at the City University of New York, where she is researching psychosocial aspects of pituitary disease. She is also a medical journalist and former reporter for The New York Times, and has worked collaboratively with the Pituitary Network Association for over a decade.

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2015 Tribute to Champions of Hope Community Nominated Awards

Posted on March 15, 2015 by MaryO

global-champions

 

It’s that time of year again, when the rare disease community looks amongst themselves to identify and nominate agents of change, agents of innovation, and individuals who are working tirelessly on behalf of those affected by one of the 7,000 rare diseases impacting over 350 million people worldwide. Rare disease activists come from many different disciplines and are usually not recognized for the good work that they are doing. This is our opportunity as a community to come together to celebrate and honor those who are setting higher standards, making significant changes and fearlessly attacking challenges differently. Join Global Genes in recognizing these incredible individuals by nominating your Champion of Hope today.

All nominees will receive a special recognition gift, and those who win, will be asked to join us in Southern California in September at the Tribute To Champions of Hope Gala. Winners must be available Friday, September 25 and Saturday, September 26. 

 

Nomination Categories

RARE Champion in Medical Care & Treatment

Nominations are being accepted for health care providers who are recognized innovators in clinical care and treatment for rare disease. This nominee engages with patients/families to optimize care and treatment, and has become a leader in care for the specific patient population. Special consideration will be given to those individuals who have created cutting edge programs and support well beyond the current standards of care.

 

RARE Champion in Science

Nominations are being accepted for researchers who are recognized innovators & leaders in disease specific research, drug development, and scientific process. This person or group works to advance research for a specific rare disease or is a key agent in the provision of tolls and approaches to developing and/or delivering more effective treatments for the rare disease community. Nominees should be conducting research in academia, industry, the clinic, within an advocacy organization or patient driven.

 

 RARE Champion in Advocacy

Nominations are being accepted for individuals either in rare disease or within the general public who have been involved in a program, event, legislative effort, or something else extraordinary to advocate for rare disease patients and their families. Nominees could include patients, patient advocates, celebrity, legislators, professional/Olympic athletes, etc.

  

RARE Champion in Teen Advocacy

Nominations are being accepted for young adults that have been instrumental in advocating for a rare disease.   We are looking for a patient or patient advocate who has been involved in a program, event, legislative effort, or something else extraordinary to advocate for rare disease patients, their families or even themselves. 

 

RARE Champion – Collaborations in Advocacy

In order to advance efforts related to advocacy, we are finding that collaborations are critical and necessary to ensure success for rare disease. We are looking to honor organizations and individuals who have demonstrated a successful collaboration related to rare disease advocacy.   This award should not include scientific collaborations, but rather should focus on collaborative programs and support initiatives, the development of collaborative resources and tools that create impact, collaboration around legislative efforts, collaborations around events, awareness efforts,etc.   Submissions must include the names and contact information for all participating individuals or organizations.

 

RARE Champion – Collaborations in Science & Technology

In order to advance efforts related to rare disease research, we are finding collaborations are critical to ensure success.   Nominees for this award will have had demonstrated success in advancing science for a disease or family of diseases by creating novel collaborations through science, driven by science collaborations set forth by advocacy organizations, or through a combination of both. Consideration will be given to new ideas working to drive systemic change within the science community through novel collaborations. Submissions must include names and contact information for all parties involved.

 Nominations open March 15.

***Award Recipients are not based on number of submissions. All nominations will be reviewed and winner decided by the Global Genes Award Committee***

2015 Community Nominated Awards for the Tribute to Champions of Hope Gala will be open for submissions starting March 15th!

We are looking to YOU to nominate those individuals and organizations who are making a difference in your rare disease community.

Nominations close on April 30th.  Awards will be determined by nominees’ merit, not by number of submissions.

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Ohio Pituitary Patient Symposium at OSU and Gentle Giant Awards Dinner

Posted on March 13, 2015 by MaryO

Please join the Pituitary Network Association and The Ohio State University for a Pituitary Patient Symposium featuring a series of pituitary and hormonal patient education seminars presented by some of the top physicians of pituitary and hormonal medicine. The symposium faculty will share the most up-to-date information and be available to answer your most pressing questions.

Following the Patient Symposium you are cordially invited to attend Pituitary Network Association’s Gentle Giant Award Reception and Dinner. Join us in honoring Dr. Daniel Prevedello for his exemplary accomplishments in the field of pituitary medicine.  Dr. Prevedello is an Associate Professor of Neurosurgery at The Ohio State University Wexner Medical center and Director of OSU’S Minimally Invasive Cranial Surgery Program.  Dr. Prevedello is internationally recognized in the field of minimally invasive surgery for brain, pituitary, and skull based tumors and has been a member of Best Doctors of America the last five years.  As a practicing neurosurgeon for over 15 years, Dr. Prevedello has performed over 1,800 procedures of which, over 800 were using the Endoscopic Endonasal Approach.  His current surgical practice encompasses the full spectrum of brain and skull based tumors, both benign and malignant, treated with minimally invasive and conventional approaches.

Registration is available for one or both events. The Patient Symposium registration fee is $30 and includes continental breakfast and lunch*. The Award Reception and Dinner is $50 per person or $80 for two (bring a friend or loved one and receive a discount of $20 on the purchase of 2 tickets).

 

*This registration is for the Patient Symposium only. The Ohio State University is offering a CME Course separate from our Symposium. For information on the CME course go to ccme.osu.edu

Date:  April 18, 2015

Fawcett Event Center
Ohio State University
Columbus, OH

Registration and Continental Breakfast 8:00 – 9:00am

Opening remarks 9:00am – Dr. Prevedello

Pituitary Disorders and the Effects on the Family

Epidemiology of Pituitary Tumors

Defining Clinically Significant Pituitary Disease

Treatment Options: Surgery

State of the Art Surgery for Cushing’s Disease

Question and Answer Session with Morning Symposium Faculty

Lunch with guest patient speakers: Concetta Troskie, Lori Burkhoff

Sexual Dysfunction and Infertility

Acromegaly

Pituitary Trivial Pursuit

Psychosocial Aspects of Pituitary Disease

Pituitary Disease and Your Symptoms

Question and Answer Session with Afternoon Symposium Faculty

Closing Remarks – Dr. Prevedello

Symposium Adjourns 5:45pm

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Clinical Trial for Cortendo

Posted on March 13, 2015 by MaryO

Cortendo Clinical Trial

 

About the Study

OBJECTIVE:

The purpose of this study is to test the effects of different doses of COR-003 on people with endogenous Cushing’s syndrome, primarily by measuring the cortisol levels in urine and secondarily by measuring other health parameters such as blood pressure, weight, liver function, etc. This study is also being conducted to find out if COR-003 is safe to use. This study is open-label, which means both the health providers and the participants in the study are aware of the drug or treatment being given.

STUDY DESIGN:

  • The study will begin with a screening period to make sure subjects are eligible to participate in the study.
  • After the screening period, subjects who are eligible for participation will each be given several different doses of COR-003, to be taken by mouth in tablet form.
  • After an individualized dose has been selected, participants will take COR-003 for 6 months.
  • Finally, participants will continue in the study for an additional 6 months at doses to be determined by the study doctor.
  • Throughout the study, participants will meet regularly with a study doctor and will take part in a variety of medical tests to make sure they are doing well and to see if COR-003 is working.
  • Participants in the study should be sure they have the time to participate. Participants will generally be followed for over a year.

See if you may be eligible for this clinical study. By providing your contact information, you will receive more information about the study and your eligibility.

About Cortendo

Cortendo is the sponsor of this study. This means Cortendo planned and organized this study. Cortendo will also collect and analyze the data from the study.

Cortendo is a global pharmaceutical company primarily focused on researching and providing treatments for rare diseases in endocrinology, such as Cushing’s syndrome. The company was founded in Sweden and its worldwide headquarters is located just outside of Philadelphia.

Fill out this form for more information: https://www.cushingssyndromestudy.com/registration.aspx

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