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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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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 -
From board member @sharm - Please Join Us to Celebrate 20 Years-Pituitary Patient Support Group. Saturday April 10, 2021: 9:00am-11:00am (PST) (Scroll below for Zoom meeting links) We invite you to join the conversation with our experts: Pejman Cohan, neuro-endocrinologist & Daniel Kelly, neurosurgery. Email me or leave your questions in the chat below. We will answer as many questions as time allows. We can't wait to see you on Zoom! Thank you, Sharmyn McGraw, patient advocate, community outreach. pituitarybuddy@hotmail.com Meeting ID: 849 6356 9824 Passcode: 596170 Zoom: https:/zoom.us/join One tap mobile +16699006833,,84963569824#,,,,*596170# US (San Jose) +12532158782,,84963569824#,,,,*596170# US (Tacoma) Dial by your location +1 669 900 6833 US (San Jose) +1 253 215 8782 US (Tacoma) +1 346 248 7799 US (Houston) +1 929 205 6099 US (New York) +1 301 715 8592 US (Washington DC) +1 312 626 6799 US (Chicago) Meeting ID: 849 6356 9824 Passcode: 596170 Find your local number: https://us02web.zoom.us/u/kdgrvRLBP7
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eSummet: Quality of Life of Pituitary Patients March 19-20, 2021
MaryO posted an 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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This event has been postponed to Dec. 5, 2020 You are Cordially Invited! The PNA is pleased to announce our participation in this event! Saturday, December 5, 2020 8:30am – 4:30pm Zuckerman Research Center 417 E. 68th St. New York, NY Memorial Sloan Kettering Cancer Center Target Audience This course is intended for endocrinologists, neurosurgeons, otolaryngologists, radiation oncologists, neurologists, ophthalmologists, neuro-oncologists, family medicine and internal medicine physicians, physicians in training and other allied health professionals who treat and manage patients with pituitary diseases. We also invite patients with pituitary disease and their caregivers to attend this educational activity and participate in our interactive afternoon breakout sessions. Overall this course aims to improve patient care and outcomes through evidence-based discussion of clinical practice guidelines and emerging therapies. Our goal is to assess and update current practices to promote earlier diagnosis and treatment of pituitary diseases. The multidisciplinary nature of the course will allow for the dissemination of knowledge across the variety of practitioners caring for pituitary patients, and for the patients themselves. Pituitary patients will be able to review treatment options, learn about ongoing clinical trials, and discuss their comprehensive care with providers and other patients. The educational objective of this patient session is to provide a forum for pituitary patients to discuss treatment options and new therapies with providers and other patients. Patients with pituitary disease and their caregivers are invited to attend this educational activity FREE of charge. If you are a patient or caregiver interested in attending, please email cme@mskcc.org to register (registration is required in order to attend). Medical Professionals who wish to attend must register online: mskcc.org/PituitaryCourse View Course Flyer
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The Barrow Pituitary Center is dedicated to educating patients, caregivers, and loved ones by providing information which is current and non-biased. Experts at this conference will address management of the emotional and physical elements of living with pituitary disorders. We hope attendees will leave empowered to make better informed decisions about their healthcare and achieve their goals for a long and fruitful life. Saturday, March 14, 2020 8:00 a.m. to 4:00 p.m. $30 per person To register call 1 (877) 728-5414 or visit us at https://www.barrowneuro.org/outreach/pituitary-center-patient-education-day/ For additional information contact Maggie Bobrowitz, RN, MBA at (602) 406.7585 or margaret.bobrowitz@ dignityhealth.org Agenda 7:00 am Registration & Refreshments 8:00 am Welcome Maggie Bobrowitz, RN, MBA 8:05 am 3D Anatomy of The Pituitary Gland Andrew Little, MD 8:15 am New Medicines on The Horizon Kevin Yuen, MD 9:00 am Nutrition Impact on Managing Pituitary Disorders Lee Renda, RD 9:30 am Break 9:45 am Emotional and Mental Health for Pituitary Patients and Their Families Linda Rio, MA, MFT 10:45 am Fertility in The Pituitary Patient Ketan Patel, MD 11:15 am Q & A Panel Morning Speakers 11:45 am Lunch 12:45 pm Intimacy and Other Forgotten Fun Dawn Herring, LMFT 1:30 pm Creating Your Image of Healing Debbie Harbinson, MHI, RN 2:30 pm Break 2:40 pm Breakout sessions: LMFT Men’s Group – Telepresence Room Dawn Herring, LMFT Women’s Group – Sonntag Pavilion Linda Rio, M.A, MFT Caregiver’s Group – Goldman Auditorium Debbie Harbinson, MHI, RN 3:40 pm Raffle Drawing – Exhibitor Table Bingo Game Maggie Bobrowitz, RN, MBA 3:45 pm Adjourn
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Keynote Speaker: Maria Fleseriu, MD FACE Registration Cost: Individual $40 Save $20 and register for 2: $60 Please email carol@pituitary.org to register! *This registration is for the Patient Symposium only. The Ohio State University is offering a CME Course separate from our Symposium. For information on the CME course go to ccme.osu.edu OSU Pituitary Symposium Agenda Saturday, July 13, 2019 Patients and Family’s Track Gabbe Conference Room – James L045 8:00 AM Registration and Breakfast 8:20 AM Welcoming Remarks and Introductions: The OSU Skull Base and Pituitary Team Lawrence Kirschner, MD, PhD OSUCCC - James 8:30 AM Hypopituitarism: Pitfalls and Recommendations Maria Fleseriu, MD, FACE Oregon Health and Science University 9:00 AM Trans-sphenoidal Approach: What to Expect? Post-Operative Complications Richard Carrau, MD OSUCCC - James 9:30 AM Acromegaly: Why it Takes That Long to Diagnose? What are the Options? Lawrence Kirschner, MD, PhD OSUCCC - James 10:00 AM Round Table Q & A 10:15 AM Mid-Morning Break 10:30 AM Growth Hormone Deficiency: Journey to Adulthood Robert Hoffman Nationwide Children's Hospital 11:00 AM Radiation Therapy? Difference Between Modalities and Possible Risks Dukagjin M Blakaj, MD, PhD OSUCCC - James 11:30 AM Round Table Q & A 11:45 AM Lunch Break and Patient's Journey 12:45 AM Surgical Approach: What to Expect Daniel Prevedello, MD Douglas Hardesty, MD OSUCCC - James 1:15 PM Visual Complications of Pituitary/Sellar Lesion? Predictors of Outcome Abbe Craven, MD OSUCCC - James 1:45 PM Round Table Q & A 2:00 PM Pituitary Trivia Luma Ghalib, MD Brian Lee OSUCCC - James 2:30 PM Pituitary Dysfunction: Effect on Mental Health and Family William Malarkey, MD OSUCCC - James 3:00 PM Recovering from Trans-sphenoidal Surgery, Challenges for the Patient and their Families Traci Douglass, RN OSUCCC - James 3:30 PM Pituitary Network Association: Cushing's Disease: Psychological Research and Clinical Implications Jessica Diller Kovler, AM, MA, PhD PNA Board Member 4:00 PM Closing Remarks 4: 15 PM Adjourn
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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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untilFriday, October 19 at 8:00am to 4:00pm Belfer Research Building, 3rd Floor 413 East 69th St., New York, NY 10021 This course is a comprehensive overview and discussion of the evaluation; management; and medical, surgical, and radiation treatments of the pituitary tumor. The conference will comprise lectures, case-based talks, and Q&A panel sessions. The pituitary gland plays an enormously important role in human development, the maintenance of various essential physiologic functions, and aging and senescence. Hence, the health of the pituitary gland is critical at all stages of human life. For this reason, there are a variety of pituitary disorders that can have a profound impact on multiple organ systems at different ages. General practitioners and even specialists in endocrinology may not be fully aware of the widespread impact of the pituitary gland in health and disease; the function of this course is to educate and inform a general medical audience on pituitary disease. For more information visit their website or contact Tatiana Soto at tas2041@med.cornell.edu or 212-746-0403.
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Please join us for Patient Day 2018 at Ultragenyx in Novato, CA on Saturday, April 7, 2018, for a day of live music, food, games, refreshments, and much more! A limited number of travel scholarships will be available for patients and loved ones that may be joining them to support their participation in Patient Day 2018. For event details, travel scholarship information and to register, please click here. An email confirmation will be sent to you upon completion of your registration. Travel scholarship awards will be sent out after February 1, 2018, once a decision is made. We welcome all families living with any rare disease to join us in celebrating their strength and courage, while also recognizing their daily challenges and sacrifices. The interactions between our employees and families provide a first-hand education about living with rare disease and further inspires the work we do for patients and families. We would like to honor and thank all of the patients who are participating in our clinical trials; however, we also have to follow federal regulations regarding the avoidance of influencing patients in our studies. So sadly, we cannot have patients who are currently participating in selected Ultragenyx or Audentes studies attend Patient Day 2018. If you are a healthcare provider caring for people with rare diseases, please feel free to forward this invitation to your relevant patients. Please contact us if you have any questions or are unable to access the registration site. Hope to see you there! Patient Day Registration Team (415) 695-8001 PatientDay@keyevents.com
