Someone Asked What I Did For Rare Disease Day…

world-rare-disease-2015

 

My husband and I went to the Rare Disease Day at NIH and told everyone who would listen about Cushing’s.  We passed out a whole box of Cushing’s business cards.

Tweeting/retweeting info about Cushing’s and Rare Disease Day today.

Adding info to one of my blogs about Cushing’s and RDD.

Adding new and Golden Oldies bios to another blog.

Getting the next Cushing’s Awareness Blogging Challenge set up for April.

And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)

Menopause, Obesity, and Diabetes Top ENDO 2015 Agenda

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Menopause, obesity, and diabetes will top the clinical agenda at the Endocrine Society’s annual meeting, ENDO 2015, with a focus on personalized and precision approaches to disease management.

Endocrine-disrupting chemicals will also take the stage at the meeting, which runs from Thursday, March 5, through Sunday, March 8, in San Diego, California. New research to be presented includes an examination of the economic costs of exposure to these chemicals and their potential teratogenic effects.

Other topics on the agenda are the effects of male obesity on a couple’s fertility, a nasal spray that could cut calorie consumption, and a renewed look at the long-term safety of menopausal hormone therapy.

“The Endocrine Society is really known for cutting-edge research,” society president Richard J Santen, MD, from the University of Virginia School of Medicine, Charlottesville, told Medscape Medical News.

“For many of us in the field, it’s the premier meeting for both science and clinical reviews and new science presentations and networking,” added steering committee chair Matthew Ringel, MD, from Wexner Medical Center, Ohio State University, Columbus. “We’re excited about trying to increase the clinical-science part of the meeting and what would be relevant to clinical, basic, and translational-research attendees.”

As always, the meeting will feature bench science, bedside medicine, and the translation from one to the other, including plenary talks on both precision and personalized approaches to menopause, new genetic discoveries in obesity that could point to novel treatment targets, the link between antihyperglycemic therapy and cardiovascular disease, and fresh insights into the mechanisms of polycystic ovary syndrome.

The meeting begins the morning of Thursday, March 5, with two presidential plenary talks: “Genomics, Pharmacogenomics, and Functional Genomics in Menopausal Women: Implications for Precision Medicine,” by oncologist James N Ingle, MD, from the Mayo Clinic, Rochester, Minnesota, and “Personalized Menopause Management: Clinical and Biomarker Data That Inform Decision Making,” by JoAnn E Manson, MD, of Brigham and Women’s Hospital, Boston, Massachusetts.

“This issue of precision medicine has been such a hot topic, but people don’t really understand it. So the fact that we’re going to feature it in the very first talk is of interest,” Dr Santen said.

While this talk will offer a glimpse of the future, individualized approaches to menopause treatment are already here and will be featured in the session immediately following the plenary, when “Treatment of Symptoms of Menopause: An Endocrine Society Clinical-Practice Guideline” will be presented.

Wide Range of Endocrine Topics Will Be Addressed

Two other clinical-practice guidelines, on management of primary adrenal insufficiency and treatment of Cushing’s syndrome, will also be revealed during the meeting, on Saturday and Sunday, respectively.

And in a special scientific session on Friday, Janet Woodcock, MD, director of the US Food and Drug Administration’s Center for Drug Evaluation and Research, will speak on “Safety and Efficacy of Diabetes Drugs: Steering Between Scylla and Charybdis.”

Meanwhile, clinically focused “Meet the Professor” sessions will address obesity and diabetes, along with a wide range of other endocrine topics, including flushing and sweating disorders, vitamin D, thyroid, gynecomastia, endocrine tumors, testosterone therapy, and genetic counseling for endocrine patients. .

The meeting’s move — from June in previous years to March — means that it is no longer back-to-back with the annual scientific sessions of the American Diabetes Association (ADA).

“We’ve moved the meeting to March, which allows us some separation from the ADA to give us an opportunity to pull in some top diabetes topics and speakers. We’ve always done that over the years, but it allows a little more focus on that area,” Dr Ringel noted.

And, he hopes, more clinicians will be able to attend both meetings going forward. “Years ago, people tried to go to both, one after the other….It’s especially hard for clinicians to be away for that length of time,” he said.

There’s another new feature for ENDO 2015 that is likely to prove popular: “Endocrine Science Social” events will take place at 6:00 pm following the afternoon symposia each day, so attendees can discuss the topics over drinks.

“The philosophy is there’s synergy between scientists and clinicians,” Dr Santen explained.

“With more than 8000 attendees expected, the meeting overall is too big for networking, so we’re going to have a social gathering after the sessions each afternoon.”

Cushing’s Media

Novartis is re-sharing these Cushing’s disease resources for Rare Disease Day:

Rare Diseases, Loud Voices

world-rare-disease-2015

 

This year, Novartis is adopting the theme, “Rare Diseases, Loud Voices,” is offering content aimed at helping to amplify the voices of patients, families and caregivers impacted by rare diseases including Cushing’s disease. We are providing educational materials and resources highlighting several rare diseases thorough a Rare Disease Day specific microsite on our website (http://www.novartisoncology.com/world-rare-disease-day-2015.jsp) and across our social media channels, including Twitter, YouTube, Facebook, Pinterest, LinkedIn and Instagram.

On the microsite you will see we have also just launched two new resources – a whiteboard animation video (also posted to the Novartis YouTube page) and an infographic (also posted to the Novartis Pinterest page (https://www.pinterest.com/pin/384002305703664913/).

As part of our Twitter activity, several Cushing’s disease-specific tweets have been issued this week, featuring the hashtags #GetLoud, #RDD2015 and #raredisease, as well as complementary visual content to try to help tie Cushing’s disease to the larger RDD discussion.

Rare Disease Day ® 2015 – Theme of the Year: Care

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Theme: Living with a Rare Disease – Slogan: Day-by-day, hand-in-hand

2015 marks eight consecutive, successful years of Rare Disease Day. Continuing the momentum, Rare Disease Day 2015 puts the focus on the daily lives of patients, families and caregivers who are Living with a Rare Disease.

Over 6000 different rare diseases have been identified to date, directly affecting the daily life of more than 30 million people in Europe alone. The complex nature of rare diseases, coupled with limited access to treatment and services, means that family members are often the primary source of solidarity, support and care for their loved ones. The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients.

Typically chronic and debilitating, rare diseases have enormous repercussions for the whole family. Living with a rare disease becomes a daily learning experience for patients and families. Though they have different names and different symptoms, rare diseases impact the daily lives of patients and families in similar ways.

How to find a diagnosis?

How to access treatments?

How to find appropriate expertise?

How to work with a team of caregivers, such as doctors or physical therapists, and other healthcare professionals and coordinate care between them?

How to operate special equipment?

How to administer treatments?

How to identify and access social services?

How to manage the economic burden of living with a rare disease?

How to ensure the well-being of the entire family and balance priorities?

Patient organisations become a crucial source of information, experience and resources. Day-by-day, hand-in-hand, together we present a united voice to advocate for the treatments, care, resources and services we all need. Patients, families and organisations are pivotal to the momentum of creating solutions for the daily challenges of living with a rare disease in solidarity with all stakeholders – caregivers, healthcare professionals, specialised social services, researchers, pharmaceutical companies, policy makers, and regulatory bodies.

Internationally, it is essential to send a strong message of solidarity to the countless rare disease patients and families throughout the entire world. Together, we can transform the individual experience of patients and relatives around the world into collective actions, support, advocacy and community building.

via Rare Disease Day ® 2015 – Theme of the Year: Care.

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