Cushing’s folks – would you be interested in occasional email newsletters returning?
If five or more people are interested, we’ll try this again. I think it’s been a couple years since the last email newsletters were sent out.
If you are interested, please sign up here. If the form takes too long to send, please email me.
NO SPAM will be sent.
Thanks!
Filed under: adrenal, adrenal crisis, Cushing's, Meetings and Conferences, pituitary, Round-up | Leave a comment »
Following the Rare Disease Day theme Living with a Rare Disease, the 2015 video poignantly recognises the millions of families, friends and carers whose daily lives are impacted by rare diseases.
A big round of applause goes out to the many individuals involved in the creation of the video. Special thanks to video participants Rita, Pietro and Beatrice who are each living with a rare disease, as well as their family members who accompanied them to the filming of the video. Thanks also to UNIAMO, the Italian national rare disease alliance, for making the video production possible and to director Carlo Hintermann, animators Lulu Cancrini and Marco Varriale and all of their team for their in-kind contribution of the creation and production of the video.
The cooperation between all those involved in this year’s video is symbolic of the unity and solidarity that families, professionals, policy makers, researchers and industry are demonstrating by living day-by-day, hand-in-hand with rare disease patients. Get involved today!
Be a part of the Rare Disease Day momentum – share the Rare Disease Day 2015 video and show the world how to live in solidarity day-by-day, hand-in-hand.
The video has been translated in 20 languages:
English – français – deutsch – español – italiano – português – čeština – dansk – العربية – magyar –suomalainen – român – polski – Türk – slovaški – 中国的 – Croatian – Ukrainian – Bulgarian – Dutch
Filed under: Cushing's, Meetings and Conferences, pituitary, Rare Diseases, Video | Tagged: Rare Disease Day, video | Leave a comment »
World Rare Disease Day is an annual observance to raise awareness for rare diseases, and improve access to treatments and medical representation for individuals with rare diseases and their families. Created by European organization EURORDIS in 2008, this day is celebrated on the last day of February each year. The 8th annual World Rare Disease Day will be held on Saturday, February 28, 2015. On this day, various activities take place globally.
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Looking for ways to get involved? Global Genes™ holds a variety of awareness raising activities starting on World Rare Disease Day and continuing throughout the month of March (because RARE deserves more than a day). Please join patients, families, friends, caregivers, scientists, physicians, researchers, health care providers, policy experts and our team to raise RARE disease awareness. Here are a few ways you can get involved! February/March Events for Rare Disease Awareness • Global Genes 1st Annual Denim Dash Virtual 5k Run/Walk for Rare Disease (Virtual/Global) March 21-29, 2015 –The Denim Dash was created through collaborative efforts between Orphan Drug Solutions and Global Genes as their first annual virtual 5K event. This virtual 5k is designed to ensure that anyone, anywhere, can participate and show their support and raise awareness for patients, family and friends of the Rare Disease Community. The cost to register is $35 and includes Denim Dash t-shirt, race bib and Blue Denim Genes Ribbon. In order to receive a t-shirt, registration must be completed by 3/6/2015. Register here. • Give RARE (Online) – Give RARE, on March 3rd, is a single day for the world to GIVE to RARE disease! In partnership with Zenzaga, the Give RARE technology platform allows rare disease nonprofits to sign-up easily to create a donation page, raise funds for their cause and get access to win prize funds from sponsors. Grants will be given throughout the day. Register by February 15th and your nonprofit will have a chance to win a year’s worth of URS charity filings (worth $5000) from launch partners Charity Compliance. Register your cause today! • ‘I Love Someone RARE & Beautiful.’ T-shirts in Partnership with the Gwendolyn Strong Foundation – Global Genes and the Gwendolyn Strong Foundation have partnered once again by bringing back the popular ‘I love someone RARE & beautiful.‘ tee in celebration of World Rare Disease Day. This is a LIMITED EDITION item, so get them while they last! They can be purchased here. • Wear That You Care™ campaign – All across the world people participate in supporting rare disease awareness and Wear That You Care by wearing the Blue Denim Genes Ribbon™ and their favorite pair of jeans on World Rare Disease Day. Wear That You Care campaigns take place locally—supporters often urge their offices, teams or other groups to wear jeans on a specific day and make a donation. • Social Media Awareness – Patients, advocates, and industry alike can grow social awareness by sharing photos, information, and events with Global Genes’ Facebook, Twitter, and Instagram. Where supporters can tag their photos or posts with hashtags #WearThatYouCare, #WRDD2015, #RAREadvocate, and #CareAboutRare to help draw attention to their content. Additionally, supporters can visit www.globalgenes.org/CareAboutRare and upload their photo into photo frames to use as social media profile images to further help spread awareness.
Additional community events are located on the Global Genes website: |
 Global Genes is a 501(c)(3) nonprofit organization advocating for rare disease globally. |
Filed under: adrenal, Cushing's, Meetings and Conferences, pituitary, Rare Diseases | Tagged: caregivers, EURORDIS, families, friends, Global Genes, health care providers, patients, physicians, policy experts, Rare disease, Rare Disease Day, researchers, scientists, treatments | Leave a comment »
On February 27, 2015, the National Institutes of Health (NIH) will celebrate the eighth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NCATS’ Office of Rare Diseases Research, the NIH Clinical Center, and other NIH Institutes and Centers; the Food and Drug Administration’s (FDA) Office of Orphan Product Development; other Federal Government agencies; the National Organization for Rare Disorders; the Genetic Alliance; Global Genes; and Uplifting Athletes. Rare Disease Day at NIH will be held in the Masur Auditorium (Clinical Center, Building 10) from 8:30 a.m. to 5:00 p.m. Attendance is free and open to the public.
Rare Disease Day at NIH is appropriate for patients and patient advocates, health care providers, researchers, industry representatives, and government employees. We will have talks from academic and government scientists, industry representatives, and the lay community.
In addition to the various scheduled talks (see agenda), posters and exhibits from many groups relevant to the rare diseases research community will be displayed. In association with Global Genes, we again encourage all attendees to wear their favorite pair of jeans.
The Rare Disease Day 2015 event will also be webcast and Clinical Center tours will be available for in-person attendees.
Filed under: adrenal, Cushing's, Meetings and Conferences, pituitary, Rare Diseases | Tagged: Global Genes, health care providers, NIH, Patient Advocate, patients, Rare Disease Day, researchers | Leave a comment »
AT ICE/ENDO 2014
CHICAGO – Late-night salivary cortisol exceeded normal limits in 10 women with recurrent Cushing’s disease a mean of 3.5 years after transsphenoidal surgery, but their urinary free cortisol remained in normal limits, according to a retrospective review from the Medical College of Wisconsin, Milwaukee.
That adds strength to the notion that late-night salivary cortisol (LNSC) catches recurrent Cushing’s that’s missed by urinary free cortisol, even though UFC remains a standard screening approach in some places.
The study is tiny and retrospective, but at the joint meeting of the International Congress of Endocrinology and the Endocrine Society, lead investigator Dr. Ty Carroll explained why the findings still matter, and also why two LNSC measurements are better than one.
Filed under: Clinical trials, Cushing's, Meetings and Conferences, pituitary, Rare Diseases | Tagged: Cushing's, Cushing's Disease, Cyclical Cushing's, Dr. Ty Carroll, ICE/ENDO 2014, late-night, late-night salivary cortisol, LNSC, Medical College of Wisconsin, salivary cortisol, study, transsphenoidal, UFC, urinary free cortisol, video | Leave a comment »
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