What have you learned about the medical community since you have become sick?
This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.
If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors’ notes, keep your lab findings, get second/third/ten or more opinions. Â Make a calendar showing which days you had what symptoms. Â Google calendars are great for this.
This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.
When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.
In this video, he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners and allies.
Join us for a variety of interactive and educational events, meet-ups, workshops and networking opportunities. Here you’ll have the opportunity to connect and engage with others in the rare disease community, while experiencing the sense of community and belonging we’ve missed so much. Gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies you can implement immediately to accelerate change.
The 2021 RARE Patient Advocacy Summit is a virtual event, happening Monday, September 27, 2021 through Wednesday, September 29, 2021.
2021 RARE Patient Advocacy Summit virtual registration is now open!
The conference brings together patients, families, healthcare professionals, and other supporters for learning, sharing, and connecting.
Due to the ongoing COVID-19 pandemic, the general sessions, breakout workshops, and networking will again be virtual. The sessions, which will offer perspectives from patients, caregivers, and the medical community, will air live and be recorded for later viewing. Throughout the forum, participants will be able to visit the exhibit hall and have peer meetings with other attendees.
Also this year, the Rare Impact Awards will return as part of the program. That presentation, on June 28, honors individuals, organizations, and industry innovators for exceptional work benefitting the rare disease community.
“The health and well-being of people living with rare diseases, their loved ones and those working to improve their lives continues to remain a top priority for all of us here at NORD,” the organization stated in its forum announcement.
“The COVID-19 pandemic brought us new ways to engage with our community and our 2020 virtual program was the most successful forum to date! In 2021 we will continue to work hard to keep our community healthy and safe while engaging in this impactful program,” NORD said.
Registration for the “patient-centric” event is $39 for patients, caregivers, students, and NORD patient organization representatives. The cost is $75 for professional advocates, people from academia, physicians, and government representatives, and $500 for NORD corporate council members. For pharmaceutical, insurance, or other representatives, registration is $650.
As for the agenda, the opening discussion will be on “The Patient-Professional Partnership” and will include three stories on the close bond between patients and their care professionals.
Breakout sessions for Saturday, June 26 will include “Coping with Grief and Anticipatory Grief,” “Shared Decision-Making with Your Care Team,” and “Working While Rare” as first offerings, followed by “Getting Involved in Clinical Research: Finding and Preparing for Clinical Trials,” “Navigating Insurance, Social Security Disability and Patient Assistance Programs,” and “The ABCs of Advocating for Your Child’s Education” in the second group of workshops.
Those will be followed by a plenary discussion on the topic “Building Resilience in a Time of Unknowns.” The speakers will explore how patients coped while waiting for a diagnosis, how they are faring while waiting for new treatments, and how they have kept it together during the pandemic.
June 27 will start with an opening plenary discussion titled “The Rare Sibling Experience.” Here, three siblings of rare disease patients will share their experiences, including how they became advocates.
Breakout sessions on this day will include “Fighting Back and Fighting Forward Through Advocacy,” “Palliative Care: Debunking the Myths,” “Rare in the Family: Navigating the Roles of Patient, Parent, and Caregiver” in the first set of discussion groups. Later offerings that Sunday will include “Aging with a Rare Condition,” “Finding Your Community and Building Your Support Network,” and “The Intersection of Race, Ethnicity, and Equity with Diagnosis and Treatment Access.”
The closing plenary discussion, titled “Rare Breakthroughs Now and on the Horizon,” will cover the latest advances in the diagnosis, treatment, and care of rare diseases.
Early this year, NORD put out a call out for individuals who were willing to share their real-life experiences with rare diseases at the conference. In all, including physicians, nurses, and other healthcare professionals, the conference will feature some 55Â speakers. Access to the virtual program will be provided via email the week of the event.
Thanks for being a member of Rare Patient Voice, LLC. We have an opportunity for you to take part in a Cushing Syndrome interview (NEON_4470) for Patients. Our project number for this study is NEON_4470.
Project Details:
Telephone interview
Interview is 60-minutes long
One Hundred Dollar Reward
Looking for Patients diagnosed with Endogenous Cushing SyndromeÂ
Things to Note:
Patient study only, Caregivers please pass the link along
Unique links, please do not pass along for 2nd use
Want to share this opportunity? Let us know and we can provide a new link
Please use a laptop/computer ONLY. No smartphones or tablets – Preliminary questions are Mobile Friendly!
Save this email to reference if you have any questions about the study!
If you have any problems, email michael.taylor@rarepatientvoice.com and reference the project number.  If you hit reply, you will get an auto do-not-reply email.
If you are interested in this study, please click the link below to answer a few questions to see if you qualify.
Thanks as always for your participation! Please be aware that by entering this information you are not guaranteed that you will be selected to participate. As always, we do not share any of your contact information without your permission.
Not Interested in this study? (Click link below so we do not send you any reminders for this study)
We truly appreciate the time you set aside to interact with our company and don’t take it for granted. Receive a $5 gift card for referring others who may want to participate in this or future studies. Invite them to join Rare Patient Voice: https://www.rarepatientvoice.com/sign-up. They, too, receive a gift card.
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.Â
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).
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.
In Person and Online Registration Options
This conference will be offered in person and through live online format with Zoom. We reserve the right to transition to a solely live online format as a result of health concerns as we move into the fall. Participants will be notified if this change develops.
What have you learned about the medical community since you have become sick?
This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.
If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors’ notes, keep your lab findings, get second/third/ten or more opinions. Â Make a calendar showing which days you had what symptoms. Â Google calendars are great for this.
This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.
When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.
In this video, he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
Please join the Pituitary Network Association and The Ohio State University for a Pituitary Patient Symposium featuring a series of pituitary and hormonal patient education sessions presented by some of the top physicians of pituitary and hormonal medicine. The symposium faculty will share the most up-to-date information and be available to answer your most pressing questions.
*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, Sept. 14, 2019
Patient and Family Track
Gabbe Conference Room – James L045
7:30 AM
Registration and Breakfast
8:00 AM
Welcoming Remarks and Introductions: The OSU Skull Base and Pituitary Team
8:05 AM
Trans-sphenoidal Approach: What to Expect? Post-Operative Complications
Richard Carrau, MD Professor Department of Otolaryngology OSUCCC – James
8:30 AM
Radiation Therapy? Difference Between Modalities and Possible Risks
Dukagjin M Blakaj, MD, PhD
OSUCCC – James
9:00 AM
What Are The Challenges Our Patients Face, and How Can We Help?
Kami Perdue, PA-C
OSUCCC – James
9:30 AM
Round Table Q & A
9:45 AM
Mid-Morning Break and Visit Vendors
10:00 AM
Acromegaly: Why it Takes That Long to Diagnose? What are the Options?
Lawrence Kirschner, MD, PhDÂ Professor Division of Endocrinology, Diabetes, and Metabolism
OSUCCC – James
10:30 AM
Growth Hormone Deficiency: Beyond Growth
Rohan Henry, MD Pediatric Endocrinologist
Nationwide Children’s Hospital
11:00 AM
Hypopituitarism: Pitfalls and Recommendations
Maria Fleseriu, MD, FACE
Oregon Health and Science University – Keynote Speaker
11:30 AM
Round Table Q & A
11:45 AM
Lunch Break and Patient’s Journey
12:45 PM
Pituitary Trivia
Luma Ghalib, MD Assistant Professor – Clinical Division of Endocrinology, Diabetes, and Metabolism
OSUCCC – James
Brian Lee, RN OSUCCC – James
1:15 PM
Surgical Approach: What to Expect
Daniel Prevedello, MD Professor and Chair, Department of Neurological Surgery
OSUCCC – James
1:45 PM
Visual Complications of Pituitary/Sellar Lesion? Predictors of Outcome
Abbe Craven, MD Assistant Professor – Clinical Department of Ophthalmology
OSUCCC – James
2:15 PM
Round Table Q & A
2:30 PM
Mid-Afternoon Break and Visit Vendors
2:45 PM
Recovering from Trans-sphenoidal Surgery, Challenges for the Patient and their Families
Traci Douglass, RN
OSUCCC – James
3:15 PM
Pituitary Network Association: Cushing’s Disease: Psychological Research and Clinical Implications
