The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum.
The organization is specifically calling for those who have a story that would likely appeal to a broad audience of rare disease patients and caregivers. It is not recruiting industry speakers, and presenters will not be paid.
The annual conference provides patients and families with practical tools for living fully with a rare disease, with an emphasis on newly diagnosed and long-term patients, and caregivers. This year’s event also will feature question-and-answer and networking sessions, and the return of the Rare Impact Awards. Participants will hear from patients, caregivers, advocates, and members of the medical community.
“The health and wellbeing 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 states on a webpage about the event. “We will continue to work hard to keep our community healthy and safe while engaging in this impactful program.”
The forum will include plenary sessions, breakout workshops, wellness programs, and discussion groups.
Opportunities to speak will include the plenary and wellness sessions, which aim to inspire and empower patients and families through examples of physician and patient collaboration, and stories about surmounting challenges. Possible topics — the agenda is not yet formalized — include “Navigating your diagnostic journey” and “Alternative therapies to managing your rare-disease symptoms.”
There also will be speakers for breakout sessions and workshops. These include “Living Rare: Education for Beginners and Newly Diagnosed,” which will target recently diagnosed patients or those who are still learning how to cope with their disorder. Topics for this session will include terminology and testing, clinical trials and treatment development, finding a rare-disease community, and coping with isolation.
A breakout session called “Living Stronger: Education for Advanced Patients and Caregivers” will be aimed at those patients and care teams who have a relatively advanced understanding of their condition and its impacts. Topics are expected to include learning to advocate for one’s self, healthcare access, coping with post-traumatic stress disorder, and tips to continue living one’s best life.
Another session, “Loving Rare: Education and Coping Strategies for the Caregiver,” will focus on self-care for those who provide support and care for patients. Topics for possible presentations will include managing relationships, stress management and self-care solutions, and transitioning care for patients at all ages.
The discussion groups at the event last year focused on newly diagnosed patients, teens and preteens, young adults, parents, and non-parenting caregiving, plus dating, divorce, and intimate partner relationships.
Prospective speakers are asked to include in the speaker form as much detail as possible about proposed topics, which can vary from the ones listed. Those interested in speaking also must include a brief biography and examples of their presentation experience, and provide information on their target audience, and what the audience should learn from the presentation.
For more information, write to [email protected]
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