Novartis is re-sharing these Cushing’s disease resources for Rare Disease Day:
Filed under: adrenal, Cushing, Cushing's, pituitary, Rare Diseases, Video | Tagged: Cushing's Disease, Dr. Harvey Cushing, infographic, Rare Disease Day, video | 2 Comments »
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.
Filed under: adrenal, Cushing's, pituitary, Rare Diseases | Tagged: caregivers, Cushing's, Facebook, families, infographic, Instagram, LinkedIn, Novartis, patients, Pinterest, Pinterist, Rare Disease Day, Twitter, YouTube | Leave a comment »
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.
Filed under: adrenal, Clinical trials, Cushing, Cushing's, Inspiration, Meetings and Conferences, pituitary, Rare Diseases | Leave a comment »
Many of the people who post on the message boards suffer from other diseases, as well as Cushing’s. These links help to provide some information about these diseases.
Acanthosis nigricans
This Topic on the Message Boards.
Acromegaly
This Topic on the Message Boards.
Addison’s Disease
This Topic on the Message Boards.
Adrenoleukodystrophy
This Topic on the Message Boards.
Carney Complex
This Topic on the Message Boards.
New Support Group for Carney Complex.
Central Serous Retinopathy
This Topic on the Message Boards.
Congenital Adrenal Hyperplasia (CAH)
This Topic on the Message Boards.
Conn’s Syndrome
This Topic on the Message Boards.
Craniopharyngioma
This Topic on the Message Boards.
Diabetes insipidus
This Topic on the Message Boards.
Ectopic ACTH Syndrome
This Topic on the Message Boards.
Empty Sella
This Topic on the Message Boards.
Fibromyalgia
This Topic on the Message Boards.
Gigantism
This Topic on the Message Boards.
Hirsuitism
This Topic on the Message Boards.
Hyperprolactinemia
This Topic on the Message Boards.
Hyperthyroidism
This Topic on the Message Boards.
Hypoalderostonism
This Topic on the Message Boards.
Hypocalcemia
This Topic on the Message Boards
Hypopituitarism
This Topic on the Message Boards.
Hypothyroidism
This Topic on the Message Boards.
Insulin Resistance
This Topic on the Message Boards.
Kidney Disease
This Topic on the Message Boards.
Lyme Disease
This Topic on the Message Boards.
Madelung’s Disease
This Topic on the Message Boards.
Menopause
This Topic on the Message Boards.
MEN Type 1
This Topic on the Message Boards.
Myasthenia Gravis
This Topic on the Message Boards.
Nelson’s Syndrome
This Topic on the Message Boards.
Osteopenia
This Topic on the Message Boards.
Osteoporosis
This Topic on the Message Boards.
Panhypopituitarism
This Topic on the Message Boards.
PCOS
This Topic on the Message Boards.
Perimenopause
This Topic on the Message Boards.
Pheochromocytoma
This Topic on the Message Boards.
Pituitary dwarfism
This Topic on the Message Boards.
Premature menopause
This Topic on the Message Boards.
Primary pigmented nodular adrenocortical disease (PPNAD)
This topic on the Message Boards
Prolactinoma
This Topic on the Message Boards.
Pseudo Cushing’s
This Topic on the Message Boards
Rathke’s cleft cyst
This Topic on the Message Boards.
ROHHAD (Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Presenting in Childhood)
This Topic on the Message Boards
Sheehan’s Syndrome
This Topic on the Message Boards.
Stein-Leventhal Syndrome
This Topic on the Message Boards.
Thymoma
This Topic on the Message Boards.
Thyroid Gland Disorders
This Topic on the Message Boards.
Turner’s Syndrome
This Topic on the Message Boards.
Von Hippel-Lindau disease
This Topic on the Message Boards.
Filed under: adrenal, adrenal crisis, Cancer, Cushing, Cushing's, growth hormone, pituitary, Rare Diseases | Tagged: acanthosis nigricans, acro, ACTH, Addison's disease, CAH, Carney Complex, Congenital adrenal hyperplasia, Conn's, craniopharyngioma, diabetes, empty sella, hirsuitism, Insulin resistance, menopause, message boards, Nelson's syndrome, osteoporosis, PCOS, pheochromocytoma, Rathke’s cleft cyst, thyroid, Turner syndrome, Von Hippel-Lindau disease | Leave a comment »
ROSH HAAYIN, Israel, February 19, 2015 /PRNewswire/ —
Beta-O2 announced today the results of a series of pre-clinical studies demonstrating that the company’s ßAir Bio-artificial Adrenal device could offer a treatment for adrenocortical insufficiency and other stress-related disorders. The results are published in the current issue of the Proceedings of the National Academy of Sciences of the United States of America (PNAS). PNAS is one of the world’s most-cited and comprehensive multidisciplinary scientific journals, publishing more than 3,800 research papers annually.
The article, titled “Transplantation of bovine adrenocortical encapsulated in alginate“ can be viewed here .
The studies cited in the article were led by Professor Stefan Bornstein and Dr. Mariya Balyura at University Hospital Carl Gustav Carus Dresden.
Professor Bornstein said, “The Bio-artificial Adrenal supersedes an immunosuppression completely. The donor cells will be protected against the immune system responses of the patient. The system lets hormones pass the half-permeable walls into the body of the receiver. Our vision is that people in the future may even receive adrenal cells from another species, as, for example, from the pig. The device creates the biotechnical conditions for it.”
Professor Bornstein continued, “I am convinced that Beta-O2’s ßAir Bio-artificial Adrenal device will revolutionize the therapy of adrenocortical insufficiency. Many more patients could benefit from transplantation because the recipients wouldn’t need any immunosuppressive drugs, at all.”
ßAir is an implantable device that provides immune protection and optimal living conditions for cells implanted within it. It has thus far proven successful in providing a viable environment for islets of Langerhans or beta cells, to thrive and naturally produce insulin on demand, a necessary function missing in people with type 1 diabetes. The product for type 1 diabetes is called the ‘ßAir Bio-artificial Pancreas’. Three patients are currently implanted with the ßAir Bio-artificial Pancreas as part of an ongoing clinical study in Sweden.
“The news today indicates that the same immune protection system being used to treat type 1 diabetes patients in the clinical trial in Sweden, also appears to work well for other types of functional cells, such as adrenal cells. We found that when placed in the ßAir, the life span of the adrenal cells significantly increased. The capacity of the adrenal cells for stable, long-term basal hormone release significantly improved as well, as did their response to various stimulating hormones. Additionally, as described in the PNAS article, we learned that ßAir has xeno transplantation or cross species capabilities. For example, using the ßAir, pig adrenal cells can be transplanted into a living being other than a pig and still remain healthy and function properly,” said Dr. Dan J. Gelvan, chairman of the board of Beta-O2.
Dr. Gelvan continued, “What all this means is that transplantation of a ‘ßAir Bio-artificial Adrenal’ with cells from another species could prove to be a treatment option for patients with adrenocortical insufficiency and other stress-related disorders. This is important because current treatment options for adrenal insufficiency are limited and have unpleasant side effects. The study findings reported in the PNAS article are also significant as they offer a sneak preview of the huge potential of ßAIR. If it can provide a viable environment for many different types of cells, then ultimately it may be prove to afford an effective treatment, if not a cure, for a long list of illnesses.”
About Beta-O2 Technologies Ltd.
Beta-O2 Technologies Ltd. is a biomedical company developing a proprietary implantable bioreactor, the ßAir. The company’s flagship product is called the ßAir Bio-artificial Pancreas. It is in development as a treatment and potential cure for type 1 diabetes (T1D). ßAir was first designed to address the main problems of the otherwise successful procedures in which islets of Langerhans (i.e. pancreatic endocrine cells) are transplanted in diabetic patients, such as the need for life-long immunosuppressive pharmacological treatment and limited functionality of the transplanted islets over time due to an insufficient oxygen supply. The company’s second pipeline product is the ßAir Bio-artificial Adrenal for the treatment of adrenocortical insufficiency and other stress-related disorders. This product is currently at the pre-clinical stage of development. Beta-O2 investors include Aurum Ventures, Sherpa Innoventures, SCP Vitalife Partners, Pitango Venture Capital and Saints Capital.
For more information, please visit http://www.beta-o2.com .
Press contact:
Marjie Hadad
MH Communications
+972-54-536-5220
marjie@netvision.net.il
SOURCE Beta-O2 Technologies Ltd
Filed under: adrenal, adrenal crisis, Health Care | Tagged: adrenal insufficiency, diabetes, Insulin, stress | Leave a comment »
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