Those who wish to acquire practical tools for living optimally with rare diseases are encouraged to attend the annual conference Live rare Live stronger Patient and Family Forum, hosted by the National Organization for Rare Diseases (NORTH) and set this year for June 26 and 27.
The conference brings together patients, families, healthcare professionals and other supporters to learn, share and connect.
Due to the ongoing COVID-19 pandemic, general sessions, small group workshops and networking will once again be virtual. The sessions, which will offer perspectives from patients, caregivers and the medical community, will be streamed live and recorded for later viewing. Throughout the forum, participants will be able to tour the exhibit hall and have peer-to-peer meetings with other participants.
Also this year, the Rare Impact Award will return as part of the program. This presentation, on June 28, honors individuals, organizations and industry innovators for exceptional work benefiting 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 remains a top priority for all of us here at NORD,” the organization said in its announcement to the forum. .
“The COVID-19 pandemic has brought us new ways to engage with our community and our 2020 virtual program has been the most successful forum to date! In 2021, we will continue to work hard to keep our community safe and healthy while committing to this impactful program, ”said NORD.
Registration for the “patient-centered” event is $ 39 for patients, caregivers, students and representatives of NORD patient organizations. The cost is $ 75 for professional lawyers, academics, physicians and government officials, and $ 500 for members of the NORD works council. For pharmaceutical, insurance or other representatives, registration is $ 650.
As for the agenda, the opening discussion will focus on “The Patient-Professional Partnership” and will include three stories about the close bond between patients and their healthcare professionals.
The breakout sessions on Saturday June 26 will include “Dealing with Grieving and Anticipated Grief,” “Shared Decision Making with Your Care Team” and “Working Being 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 Your Child’s Education In the second group of workshops.
These will be followed by a plenary discussion on the theme “Building resilience in times of unknown”. Speakers will explore how patients coped while awaiting a diagnosis, how they are doing while awaiting new treatments, and how they have kept it together during the pandemic.
June 27 will begin with an opening plenary discussion titled “The Rare Experience of Brothers and Sisters”. Here, three siblings of rare disease patients will share their experiences, including how they became advocates.
This day’s breakout sessions will include “Fighting and Fighting for the Future through Advocacy”, “Palliative Care: Debunking Myths”, “Uncommon in the Family: Navigating the Roles of Patient, Parent and Caregiver In the first round of focus groups. This Sunday’s subsequent offerings will include “Aging with a Rare Disease,” “Finding Your Community and Building Your Support Network” and “The Intersection of Race, Ethnicity and Equity with Diagnosis and access to treatment ”.
The closing plenary discussion, titled “Rare Breakthroughs Now and on the Horizon”, will cover the latest advances in rare disease diagnosis, treatment and care.
Earlier this year, NORD appealed to people who were ready to share their real-life experiences with rare diseases at the conference. In total, doctors, nurses and other health professionals, the conference will bring together some 55 speakers. Access to the virtual program will be provided by email the week of the event.