In conjunction with this year's Annual Meeting, INPCS will be offering several half-day pre-conference workshops and working groups on Tuesday, September 9th, including the 2nd annual NeuroCARES meeting. These workshops are optional and registration fees are in addition to Annual Meeting registration fees. Workshops can be attended as stand-alone events, or in conjunction with the Annual Meeting. More information about each workshop is below.
PRE-CONFERENCE WORKSHOPS & WORKING GROUPS
NeuroCARES 2025
Leader(s): INPCS Research Committee
Time: 8:00am-4:00pm
Description: NeuroCARES is an NIH-funded, research-focused event designed for neuropalliative care researchers to connect, identify research gaps, and set future priorities. For more information about NeuroCARES, please click here (opens in a new window).
Intended Audience: Anyone interested in neuropalliative care research.
In-Person Registration Fees: $99 INPCS member / $149 non-member
Virtual Option: There will be an option for individuals to view this event virtually, though not with any ability to interact with in-person attendees.
How to Register: The registration form for this workshop is included in the registration form for the INPCS Annual Meeting, which can be accessed by clicking here.
INPCS Huntington's Disease Working Group
Leader(s): Dana Morrissey, MSW, MPH, Jennifer Corcoran, MD, Amy Ogilvie, PhD, Leonard Sokol, MD
Time: 8:00am-12:00pm
Description: Huntington’s disease is a devastating genetic neurodegenerative illness. To date, there has been little written about the palliative care needs of this population and there is a great need (and opportunity) for neuropalliative care research, clinical guidance, education and advocacy. This is an open working group to build a network of patients, families, advocates, researchers, clinicians and educators to review what is known, set priorities for the field, and start to collaborate to improve care for people living with HD and their families.
Intended Audience: Clinicians, researchers, advocates, and caregivers
Registration Fees: Free
How to Register: The registration form for this workshop is included in the registration form for the INPCS Annual Meeting, which can be accessed by clicking here.
Working Group: Non-Profit Organizations and Neuropalliative Care
Leader(s): Benzi Kluger, MD, MS
Time: 8:00am-12:00pm
Description: One of the top strategic goals of the International Neuropalliative Care Society (INPCS) is to partner with other non-profits, particularly those tied to specific neurologic illnesses, to improve neuropalliative care information and resources available to patients, families, and the public. We encourage persons associated with neurology or palliative care non-profits to join the conversation and help us to accelerate progress in this important area.
Registration Fees: Free
How to Register: Attendance in this working group is by invitation only. If you represent a non-profit organization and would like to be invited to attend this working group, please email info@inpcs.org for more information.
The ACTIVE Guidelines Working Group: Advancing Care Planning, Caregiver Support, Treatment of Symptoms, Individualized Goals of Care, the Voice and Values of the Person, and End-of-Life Coordination in Alzheimer’s Disease and Related Dementias
Leader(s): Leonard Sokol, MD
Time: 1:00pm-5:00pm
Description: This working group is dedicated to the development of international guidelines aimed at delivering high-quality, person-centered care for individuals diagnosed with Alzheimer’s disease and related dementias (ADRDs). These guidelines will be formulated based on the ACTIVE model, which represents Advance Care Planning, Caregiver Support, Treatment of Symptoms, Individualized Goals of Care, Voice and Values of the Person, and End-of-Life Coordination. The ACTIVE framework acknowledges that even in the context of progressive, life-limiting, dementing disorders, meaningful opportunities exist to uphold dignity, comfort, and informed decision-making. It is designed to assist clinicians, caregivers, healthcare systems, and care teams in addressing the needs of individuals living with dementia across all stages of the illness and their families. Currently, there is a lack of cohesive, evidence-based guidance for neuropalliative care in dementia, particularly regarding the early and consistent integration of palliative principles throughout the progression of the disease. The aim of this working group is to bring together an eclectic international team of clinicians, researchers, advocates, and caregivers to develop these guidelines collaboratively. Through consensus-building, literature review, and cooperative discourse, the group will outline essential priorities for care, identify gaps in current practices, and establish a foundation for future research, education, and implementation initiatives. The ACTIVE guidelines are intended to serve as a flexible framework that can be adapted to various health systems and cultural contexts, ultimately seeking to enhance the quality of life for both patients and their families.
Intended Audience: Clinicians, researchers, advocates, and caregivers
Registration Fees: Free
How to Register: The registration form for this workshop is included in the registration form for the INPCS Annual Meeting, which can be accessed by clicking here.
