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We’re looking for caregivers to loved ones diagnosed with Cushing’s Disease or patients diagnosed with Cushing’s Disease to participate in a research study.
Sign up here: https://rarepatientvoice.com/CushingsHelp/
Filed under: Cushing's, Interview, pituitary | Tagged: caregivers, Cushing's Disease, pituitary, research, study | Leave a comment »
This study was attempted to assess bone mineral density and fracture rates in 89 patients with confirmed Cushing’s syndrome at the time of diagnosis and 2 years after successful tumor resection.
Researchers ascertained five bone turnover markers at the time of diagnosis, 1 and 2 years postoperatively. Via chemiluminescent immunoassays, they assessed bone turnover markers osteocalcin, intact procollagen‐IN‐propeptide, alkaline bone phosphatase, CrossLaps, and TrAcP 5b in plasma or serum. For comparison, they studied 71 gender‐, age‐, and BMI‐matched patients in whom Cushing’s syndrome had been excluded.
The outcomes of this research exhibit that the phase immediately after surgical remission from endogenous CS is defined by a high rate of bone turnover resulting in a striking net increase in bone mineral density in the majority of patients.
Read the full article on Journal of Bone and Mineral Research.
Filed under: Cushing's, symptoms | Tagged: bone fractures, bones, Cushing's Syndrome, remission, research, resection, tumor | Leave a comment »
Clinical trials are research studies that test new treatments to see how well they work. Our Pituitary and Skull Base Tumor Center is leading clinical trials investigating new medical therapies for patients with Cushing’s disease and acromegaly. They are also involved in quality-of-life studies aimed at improving long-term follow-up care for patients who need it.
Our experts can help determine which clinical trials are right for you. The following clinical trials for pituitary tumors are currently enrolling new patients.
To learn more about a particular study, choose from the list below. For more information about our research and clinical trials, call us at 212-639-3935, or talk with your doctor.
Filed under: adrenal, Clinical trials, Cushing's, pituitary, Treatments | Tagged: Acromegaly, adrenal, clinical trial, COR-003, Cushing's, LCI-699, New York City, Osilodrostat, pituitary, research, Sloan Kettering | Leave a comment »
Today is #RareDiseaseDay 2017! Today, with events taking place in over 90 countries all around the world, we hope to raise more awareness than ever for rare diseases!
With the theme of research, and the slogan, ‘With research, the possibilities are limitless’, #RareDiseaseDay 2017 is an opportunity to call on all researchers, universities, students, companies, policymakers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.
This year’s Rare Disease Day video, which has been viewed over a hundred thousand times and translated into over 30 languages, draws a parallel with a routine that many of us go through multiple times a day – searching for an answer on the internet. The video highlights how isolating it is when you search on the internet but receive the response ‘your search had no results’. It also highlights the hope and promise that comes with additional research into rare diseases, something that must be continuously strived for.
You are still able to participate in raising awareness of the day and be part of the change, by sharing the video, the poster, or any Rare Disease Day material on your Facebook, Twitter or other social media platforms.
This year, on the tenth edition of the day, Rare Disease Day events will be held for the first time in four African nations, Botswana, Nigeria, Senegal and Sudan. Events will also be held for the first time in Saint Pierre and Miquelon.
Learn more at http://www.rarediseaseday.org/page/news/today-is-rare-disease-day-2017
Filed under: Cushing's, Rare Diseases | Tagged: Rare Disease Day, research, video | 1 Comment »
I’m on my way to California today. I was nominated for an award in the 2015 Tribute to Champions of Hope so I’ll be flying to Huntington Beach for the 2-day Fourth Annual RARE Patient Advocacy Summit. Follow along with LiveStream.
Saturday night will be the Gala.
Find my name on the list of nominees here: https://globalgenes.org/championsofhope/
One of the very best parts of this trip, though, is that I’m staying with a good friend from the Cushing’s Community.
Filed under: Cushing's, Meetings and Conferences, pituitary, Rare Diseases | Tagged: award, Champions of Hope, Champions of Hope Gala, community, fundraising, Global Genes, legislation, LiveStream, MaryO, Patient Advocate, Rare disease, research, support, The Fourth Annual RARE Patient Advocacy Summit | Leave a comment »
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