🎤 4th Pituitary Update | Perelman School of Medicine at the University of Pennsylvania

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

🏆 Last chance to submit a RareVoice Nomination!

 

1) Visit RareVoiceAwards.org

2) Review the 2021 RareVoice categories

3) Nominate an advocate who gave rare disease patients a voice on

Capitol Hill and in state government in 2020 and 2021.

4) Submit!

The RareVoice Awards recipients are chosen by a committee from nominations received from the rare disease community.

 
Nominations close August 27th, 2021
Federal Advocacy – Congressional Staff
Honors congressional staffers who have worked to create and enact policies for the rare disease community

Federal Advocacy – Patient/Organization
Honors advocates or organizations that have worked to create and pass federal legislation

State Advocacy – State Legislator
Honors state legislators who have worked to create and enact policies for the rare disease community

State Advocacy – Patient/Organization
Honors advocates or organizations that have worked to create and pass state legislation

Federal or State Advocacy by a Teenager
Honors teen advocates that have advocated for state or federal legislation

Diversity Empowerment – Patient/Organization
Honors advocates or organizations that empowered diverse voices in advocacy

Artist-to-Advocate
Honors individuals who have utilized their artwork to advocate for federal or state legislation

For information about sponsorship, please contact Elissa Taylor, etaylor@everylifefoundation.org
EveryLife Foundation For Rare Diseases
1012 14th Street, NW, Suite 500 | Washington, District of Columbia 20005
202-697-7273 | info@everylifefoundation.org

🎤 RARE Patient Advocacy Summit

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!

Register here: https://web.cvent.com/event/289bd182-abf4-49b0-90be-c2320566c276/regProcessStep1

Speakers: https://globalgenes.org/summit-featured-speakers/

Interested in becoming a speaker? Fill out the speaker inquiry form here.

🎤 Living Rare Living Stronger ~ Nord® Patient and Family Forum June 26-27Th

2021 Living Rare, Living Stronger NORD Patient and Family Forum featuring the Rare Impact Awards

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27.

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 55 speakers. Access to the virtual program will be provided via email the week of the event.

📞 Webinar: Updates on Treating Hypothyroidism

 

Updates on Treating Hypothyroidism

Dr. Theodore Friedman will be giving a webinar on Updates on Treating Hypothyroidism.

Topics to be discussed include:

  • New articles showing patients prefer desiccated thyroid
  • New thyroid hormone preparations
  • Update on desiccated thyroid recalls
  • New article on why TSH is less important than thyroid hormone measurements
  • What is the difference between desiccated thyroid and synthetic thyroid hormones?
  • Is rT3 important?

Sunday • April 25• 6 PM PDT

Via Zoom Click here to join the meeting or
https://us02web.zoom.us/j/4209687343?pwd=amw4UzJLRDhBRXk1cS9ITU02V1pEQT09
OR
+16699006833,,4209687343#,,,,*111116#
Slides will be available before the webinar and recording after the meeting at slides

      Meeting ID: 420 968 7343 Passcode: 111116
Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button.
For more information, email us at mail@goodhormonehealth.com

 

🎤 Mary O’Connor (MaryO) second archived interview with Robin Smith (staticnrg)

 

Robin had Cushing’s for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom she found in 2004 said “endocrine”. She didn’t figure it out, either, but at least Robin had a piece of the puzzle and she found cushings-help.com. Robin immediately went into denial and left for several months until she got so sick she knew she had to have help. She had originally sought this PCP because she had been going to all sorts of doctors.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/03/07/symptoms-and-diagnosis-part-2-cushings-message-board-members

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🎤 Archived Interview: Cushing’s Diagnosis and Symptoms, part 2

 

Listen as Robin Smith (staticnrg) and Mary O’Connor (MaryO) co-host Cushing’s message board members calling in to talk about their fight for diagnosis and treatment. The show will be opened with a brief explanation of what Cushing’s is and what the symptoms are.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/03/13/-cushings-diagnosis-and-symptoms-part-2

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🎤 Archived Interview with Judy, Mom to Two Cushing’s Patients, and her Daughter, Jess

 

Interview with Judy, the mother of two Cushing’s patients, and her daughter, Jess, a high school student with Cushing’s. Robin (staticnrg) hosted.

Sadly, Judy died on December 15, 2019, after battling lung cancer, Atrial fibrillation, and total body weakness.  She was a great warrior for her children.  Here’s her bio: https://cushingsbios.com/2019/12/15/in-memory-judy-kennedy-december-15-2019/

 

Listen at http://www.blogtalkradio.com/cushingshelp/2008/01/17/judy-mom-to-2-cushings-patients-and-her-daughter-jess

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🎤 Archived Interview: JenS discussed Bilateral Adrenalectomy (BLA)

Jen had Pituitary surgery by Dr. Shahinian 4/28/04, removed ACTH secreting corticotroph hyperplasia and prolactinoma.

She was diagnosed by Dr. Theodore Friedman as cyclical pituitary Cushings.

Her second Surgery 7/21/04 for infection resulted in neuralgia. She had a BLA in March 2006 as Corticol Hyperplasia returned and she now has possible Nelson’s syndrome. Jen also has Thyroid Issues (Hashimoto’s, multiple nodules and entire thyroid removed 2003) and she is Growth Hormone Deficient (3/2006)

Listen at http://www.blogtalkradio.com/cushingshelp/2008/02/29/jens-discusses-bilateral-adrenalectomy-bla

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🎤 Archived Cushing’s Awareness Day Archived Voice Chat!

Listen as Jayne Kerns and Robin Smith (staticnrg) hosted a Cushing’s Awareness Day Special Chat a few years ago.

This chat had callers and some testimonials for the website and Mary O’Connor (MaryO). Ideas were discussed for setting up non-profit status for this website.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/04/09/special-cushings-awareness-day-voice-chat

 

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