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We are thrilled to invite you to join us and hundreds of others virtually for Rare Disease Week on Capitol Hill from February 22nd to March 2nd, for a week that can change your life. In 2022 advocates will once again have the opportunity to participate in the Points for Advocacy Scavenger Hunt and the EveryLife Foundation will award a total of $100,000 to the top-50 point earners' rare disease non-profit organization of choice! Over the last 11 years, thousands of rare disease patients, family members, friends, and health care providers have joined together to give rare disease patients a voice on Capitol Hill. Meeting virtually during the pandemic has not slowed us down but has reenergized many of us on the importance of our advocacy work. Both of our first times attending Rare Disease Week, Sarah in 2017 and Sarita in 2021, sparked our passion for advocacy! We hope that you will join us for Rare Disease Week which brings the community together to learn, network and advocate. Please reach out to RDLA staff Katelyn Laws at klaws@everylifefoundation.org if you have any questions or need more information.
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We are thrilled to invite you to join us and hundreds of others virtually for Rare Disease Week on Capitol Hill from February 22nd to March 2nd, for a week that can change your life. In 2022 advocates will once again have the opportunity to participate in the Points for Advocacy Scavenger Hunt and the EveryLife Foundation will award a total of $100,000 to the top-50 point earners' rare disease non-profit organization of choice! Over the last 11 years, thousands of rare disease patients, family members, friends, and health care providers have joined together to give rare disease patients a voice on Capitol Hill. Meeting virtually during the pandemic has not slowed us down but has reenergized many of us on the importance of our advocacy work. Both of our first times attending Rare Disease Week, Sarah in 2017 and Sarita in 2021, sparked our passion for advocacy! We hope that you will join us for Rare Disease Week which brings the community together to learn, network and advocate. Please reach out to RDLA staff Katelyn Laws at klaws@everylifefoundation.org if you have any questions or need more information.
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4th Pituitary Update | Perelman School of Medicine at the University of Pennsylvania
MaryO posted a calendar event in Cushie Calendar
Friday, October 8, 2021 7:45 am - 4:00 pm OVERVIEW This conference will present the newest approaches and techniques in the diagnosis and treatment of pituitary adenomas, including acromegaly and Cushing’s disease. Diagnosis and treatment will be covered from the interdisciplinary and interprofessional perspective of endocrinology, radiology, neuro-ophthalmology, neurosurgery, and radiation oncology. Didactic presentations will include case discussions. The conference format, although virtual will provide a significant opportunity for interaction with expert faculty. A simulcast of transsphenoidal surgery will occur throughout the conference with real-time discussion and case review of the progress on the day of surgery, post-op management, surveillance and follow-up care. Participants will leave with up-to-date, practical information and written resources including: DDAVP stimulation protocol for Cushing’s disease localization, perioperative glucocorticoid and salt-water monitoring protocol, clinic note templates, laboratory testing panels, "Sick Day Rules" letter for patients with adrenal insufficiency. These materials will have immediate clinical application and help streamline care of pituitary patients at the office and during hospitalizations. LEARNING OBJECTIVES – CME Upon completion of this conference, participants should be able to: Evaluate a sellar mass to determine if it is a pituitary adenoma or other lesion Identify the value and limits of MRI in evaluating a sellar mass List the potential and limits of endoscopic transsphenoidal surgery for pituitary adenoma Manage, medically, a patient following endonasal surgery List the different types of radiation, including linear accelerator (IMRT, Cyberknife), gamma radiation, (Gamma Knife) and proton beam Treat, medically, patients who have acromegaly and Cushing’s disease Apply multidisciplinary, interprofessional and interdisciplinary approach in the management of pituitary disease LEARNING OBJECTIVES – PATIENTS Upon completion of this course patients, families and advocates will be able to: Identify the latest advances in pituitary tumor treatment Demonstrate familiarity with the terminology and technical aspects of pituitary tumor care Demonstrate patient-active behavior in working with the healthcare team to make ongoing treatment decisions WHO SHOULD ATTEND This activity has been designed for endocrinologists, neurosurgeons, ophthalmologists, gynecologists, general radiologists, nurse practitioners, nurses, residents and fellows. Additionally, patients and their caregivers, family members, advocates and members of the public who may benefit from understanding current innovative approaches to pituitary tumor care are invited. For additional information please contact Hyacen Putmon. Register Now -
eSummet: Quality of Life of Pituitary Patients March 19-20, 2021
MaryO posted a calendar event in Cushie Calendar
untilRegister Now! 2nd annual WAPO eSummit March 19 & 20, 2021 World Alliance of Pituitary Organizations represents the voice of 37 patient advocacies around the globe. This event is also translated into Español, there’s something for everyone! The World Alliance of Pituitary Organizations (‘WAPO’) represents the voice of 37 patient advocacies around the globe. We seek to empower and improve the Quality of Life of Pituitary Patients, by sharing knowledge and inform you about treatment choices. By registering to the WAPO eSummit 2021, you will have a unique opportunity to learn about the latest medical research, raise questions and dialogue with international experts on the pituitary gland! Get involved and register in one of the provided languages. We are looking forward to meeting you! For more information visit the link below. https://web.cvent.com/event/aaf5e35f-793d-49ff-9f4b-138f155dbbc2/summary?fbclid=IwAR0-ah0tkUnx7HmBkQlEoIMOEBvQOGxnvz_XP7fC7BDKhEKkuBhgXfVQL04 -
Register Now! 2nd annual WAPO eSummit March 19 & 20, 2021 World Alliance of Pituitary Organizations represents the voice of 37 patient advocacies around the globe. This event is also translated into Español, there’s something for everyone! The World Alliance of Pituitary Organizations (‘WAPO’) represents the voice of 37 patient advocacies around the globe. We seek to empower and improve the Quality of Life of Pituitary Patients, by sharing knowledge and inform you about treatment choices. By registering to the WAPO eSummit 2021, you will have a unique opportunity to learn about the latest medical research, raise questions and dialogue with international experts on the pituitary gland! Get involved and register in one of the provided languages. We are looking forward to meeting you! For more information visit the link below. https://web.cvent.com/event/aaf5e35f-793d-49ff-9f4b-138f155dbbc2/summary?fbclid=IwAR0-ah0tkUnx7HmBkQlEoIMOEBvQOGxnvz_XP7fC7BDKhEKkuBhgXfVQL04
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13th Annual Conference for Adults with Endocrine Disorder
MaryO posted a calendar event in Cushie Calendar
until13th Annual Conference for Adults with Endocrine Disorders in Partnership with Barrow Neurological Institute Pituitary Center February 28th, 2019 - March 3rd, 2019 Phoenix, Arizona Schedule of Events Thursday 5:00 pm - 7:00 pm Welcome Reception, Wyndham Garden Phoenix Midtown Friday 9:00 am - 4:00 pm Exhibitors, Barrow Pituitary Center 10:00 am - 12:00 pm Educational Segments, Barrow Pituitary Center 12:00 am - 1:00 pm Lunch (included) 1:00 pm - 3:00 pm Educational Segments, Barrow Pituitary Center 5:00 pm - 8:00 pm Group outing to Scottsdale Waterfront Saturday 10:00 am - 12:00 pm Educational Segments, Barrow Pituitary Center 12:00 am - 1:00 pm Lunch (included) 1:00 pm - 3:30 pm Educational Segments, Barrow Pituitary Center Sunday 9:00 am - 1:30 pm Educational Segments, Wyndham Garden Phoenix Midtown ********************************************************** Friday Educational Segments at Barrow Pituitary Center 10:00 am Managing Cushings: Navigating Through the Maze, Yuen or 10:00 am Managing AGHD: Daily and Beyond, Knecht 11:00 am Hypothalamic Obesity: Not Just Calories In, Calories Out, Connor 12:00 pm LUNCH (included) 1:00 pm Me, Myself and My Adrenal Insufficiency, Yuen 2:00 pm Navigating the Medical Maze, Herring Saturday Educational Segments at Barrow Pituitary Center 10:00 am Beyond AGHD and Cushings: Familial and Genetic Factors, Stratakis 11:00 am Q&A, Stratakis 12:00 pm LUNCH (included) 1:00 pm Tools for Coping with my Endocrine Disorder, Jonas 2:00 pm Finnigan and Friends: A Year in AI Training, Palmer 2:30 pm Quality of Life Study, Cushings, Edgar & Keil or 2:30 pm Life is What You Make Of It, Jones Sunday Educational Segments at Wyndham Garden Phoenix Midtown 9:00 am Preventing Muscle Wasting and Nutrition, Fine 10:00 am Nuances of Treating Hypothyroidism, Friedman 11:00 am Macrilen Stimulation Test for Growth Hormone Deficiency, Friedman 11:45 am The New and The Old for Diagnosing Cushing's Syndrome, Friedman 12:30 pm Ask the Wiz, Friedman Location Barrow Neurological Institute at St. Joseph's Hospital and Medical Center Goldman Auditorium and Sonntag Pavilion 350 W. Thomas Rd. Phoenix, AZ 85013 Transportation will be provided on Friday and Saturday between the Wyndham Hotel to Barrow for an hour prior to the segments and an hour after close of the segments. The hotel is approximately 1/2 mile away from Barrow Pituitary Center if you choose to walk or travel there on your own. Hotel Room Rates and Reservations Wyndham Garden Phoenix Midtown 3600 N. 2nd Ave. Phoenix, AZ 85013 $109 per night + tax. Includes free wifi, parking and buffet breakfast To make hotel reservations call 602-604-4900 and ask for The MAGIC Foundation guest room block. Refrigerators are first come so be sure to request one when making your reservation. Airport Transportation Transportation is not provided to/from the hotel from the airport. The Wyndham is approximately 9 miles from the airport. Preferred airport is Phoenix, AZ - PHX - Sky Harbor Intl. Deadline to Register and book your hotel is January 28, 2019 View the entire PDF Program-
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13th Annual Conference for Adults with Endocrine Disorders in Partnership with Barrow Neurological Institute Pituitary Center February 28th, 2019 - March 3rd, 2019 Phoenix, Arizona Schedule of Events Thursday 5:00 pm - 7:00 pm Welcome Reception, Wyndham Garden Phoenix Midtown Friday 9:00 am - 4:00 pm Exhibitors, Barrow Pituitary Center 10:00 am - 12:00 pm Educational Segments, Barrow Pituitary Center 12:00 am - 1:00 pm Lunch (included) 1:00 pm - 3:00 pm Educational Segments, Barrow Pituitary Center 5:00 pm - 8:00 pm Group outing to Scottsdale Waterfront Saturday 10:00 am - 12:00 pm Educational Segments, Barrow Pituitary Center 12:00 am - 1:00 pm Lunch (included) 1:00 pm - 3:30 pm Educational Segments, Barrow Pituitary Center Sunday 9:00 am - 1:30 pm Educational Segments, Wyndham Garden Phoenix Midtown ********************************************************** Friday Educational Segments at Barrow Pituitary Center 10:00 am Managing Cushings: Navigating Through the Maze, Yuen or 10:00 am Managing AGHD: Daily and Beyond, Knecht 11:00 am Hypothalamic Obesity: Not Just Calories In, Calories Out, Connor 12:00 pm LUNCH (included) 1:00 pm Me, Myself and My Adrenal Insuffiency, Yuen 2:00 pm Navigating the Medical Maze, Herring Saturday Educational Segments at Barrow Pituitary Center 10:00 am Beyond AGHD and Cushings: Familial and Genetic Factors, Stratakis 11:00 am Q&A, Stratakis 12:00 pm LUNCH (included) 1:00 pm Tools for Coping with my Endocrine Disorder, Jonas 2:00 pm Finnigan and Friends: A Year in AI Training, Palmer 2:30 pm Quality of Life Study, Cushings, Edgar & Keil or 2:30 pm Life is What You Make Of It, Jones Sunday Educational Segments at Wyndham Garden Phoenix Midtown 9:00 am Preventing Muscle Wasting and Nutrition, Fine 10:00 am Nuances of Treating Hypothyroidism, Friedman 11:00 am Macrilen Stimulation Test for Growth Hormone Defiency, Friedman 11:45 am The New and The Old for Diagnosing Cushing's Syndrome, Friedman 12:30 pm Ask the Wiz, Friedman Location Barrow Neurological Institute at St. Joseph's Hospital and Medical Center Goldman Auditorium and Sonntag Pavilion 350 W. Thomas Rd. Phoenix, AZ 85013 Transportation will be provided on Friday and Saturday between the Wyndham Hotel to Barrow for an hour prior to the segments and an hour after close of the segments. The hotel is approximately 1/2 mile away from Barrow Pituitary Center if you choose to walk or travel there on your own. Hotel Room Rates and Reservations Wyndham Garden Phoenix Midtown 3600 N. 2nd Ave. Phoenix, AZ 85013 $109 per night + tax. Includes free wifi, parking and buffet breakfast To make hotel reservations call 602-604-4900 and ask for The MAGIC Foundation guest room block. Refrigerators are first come so be sure to request one when making your reservation. Airport Transportation Transportation is not provided to/from the hotel from the airport. The Wyndham is approximately 9 miles from the airport. Preferred airport is Phoenix, AZ - PHX - Sky Harbor Intl. Deadline to Register and book your hotel is January 28, 2019 View the entire PDF Program
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