🎤 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.

📞 Cushing Syndrome and COVID-19

About

Who Should Attend: Individuals with Cushing’s disease and their caregivers.

When: Thursday, March 4, 2021, 6 PM, Eastern

Where: Virtual presentation via Zoom. Click the Zoom link for the online event or call one of the phone numbers below:

833-548-0276 (US Toll-free)
833-548-0282 (US Toll-free)
877-853-5257 (US Toll-free)
888-475-4499 (US Toll-free)

Whether you log on via computer or telephone, you will be asked for the meeting ID and password.

Meeting ID: 969 3392 7432
Passcode: 945590

Attendees will be muted until the end of the presentation, at which time we will take questions.

There is no fee for this event.

Contact Maggie Bobrowitz with any questions: Margaret.Bobrowitz@DignityHealth.org or (888) 726-9370.

👥 Memorial Sloan Kettering 2020 Update on the Treatment of Pituitary Tumors

 

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

pdfView Course Flyer

✍️ Sign Up and Enjoy Patient Benefits

 

Sign Up and Enjoy Patient Benefits

To join our database and to receive a $5 gift card if you qualify, please complete the form below. Currently we are looking for patients and caregivers with many different rare conditions. Please fill out the sign-up form below and we’ll let you know if you qualify. If you are the caregiver of more than one patient, or are both a patient and caregiver, please fill out a separate entry for each and you will receive multiple gift cards.

Please be aware that each entry is checked individually. Please include your correct personal phone number as we will call you to verify your information.  It may take up to four weeks before you receive your gift card if you qualify. Read more about how we use your information.

At this time we are accepting patients and caregivers across all diseases and conditions. However, that does not guarantee we will have surveys for you. If there are not any companies that have treatments available, or there are no companies developing treatments, then there would be no sponsors for surveys. But we are always looking for sponsors for all disease categories!

Only one caregiver per household, please! That is because our survey sponsors won’t allow more than one response from caregivers in the same household. If you have more than one caregiver, you can decide which of you can do each survey.

Please be aware that the rewards you earn from participating in market research, like all income you receive, is considered taxable by the IRS. We are required to submit form 1099 for each patient or caregiver whom we pay $600 or more in a year.

We are proud to say that we’ve rewarded patients with over $2.1 million for participating in surveys in the past four years!

Register here!