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.
âThe 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,â the organization stated in its forum announcement.
âThe 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,â NORD said.
Registration for the âpatient-centricâ 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 âThe Patient-Professional Partnershipâ and will include three stories on the close bond between patients and their care professionals.
Breakout sessions for Saturday, June 26 will include âCoping with Grief and Anticipatory Grief,â âShared Decision-Making with Your Care Team,â and âWorking While Rareâ as first offerings, followed by âGetting Involved in Clinical Research: Finding and Preparing for Clinical Trials,â âNavigating Insurance, Social Security Disability and Patient Assistance Programs,â and âThe ABCs of Advocating for Your Childâs Educationâ in the second group of workshops.
Those will be followed by a plenary discussion on the topic âBuilding Resilience in a Time of Unknowns.â 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 âThe Rare Sibling Experience.â Here, three siblings of rare disease patients will share their experiences, including how they became advocates.
Breakout sessions on this day will include âFighting Back and Fighting Forward Through Advocacy,â âPalliative Care: Debunking the Myths,â âRare in the Family: Navigating the Roles of Patient, Parent, and Caregiverâ in the first set of discussion groups. Later offerings that Sunday will include âAging with a Rare Condition,â âFinding Your Community and Building Your Support Network,â and âThe Intersection of Race, Ethnicity, and Equity with Diagnosis and Treatment Access.â
The closing plenary discussion, titled âRare Breakthroughs Now and on the Horizon,â 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.
Pituitary Patient Support Group Saturday March 24, 2018
Pejman Cohan, MD 10:00am – 11:45am
Daniel F. Kelly, MD 11:45am – 12:45pm
Lunch 1:00pm – 2:00pm
Family and friends welcome
Please RSVP to Sharmyn Mcgraw pituitarybuddy@hotmail.com