Periodic Paralysis Association Marks World Periodic Paralysis Day on March 23, Urging Faster Diagnosis and First-Ever Dedicated Research Funding
CHICAGO--( BUSINESS WIRE)--The Periodic Paralysis Association (PPA) today announced the 2nd annual World Periodic Paralysis Day (WPPD), to be observed March 23, 2026. The global initiative brings together nonprofit organizations, clinicians, advocates, patients, and caregivers to raise awareness of periodic paralysis and related rare neuromuscular disorders, while calling for faster diagnosis, improved care, and dedicated research funding.
On average, individuals with periodic paralysis face more than 20 years between symptom onset and accurate diagnosis, highlighting a critical gap in recognition, education, and access to appropriate care.
Supported by lead sponsor Xeris Pharmaceuticals®, this year’s campaign expands international participation across advocacy, clinical, and patient communities, with coordinated awareness efforts, patient storytelling initiatives, and policy engagement across the United States and globally. Landmark buildings in Chicago, Tampa, Philadelphia, and San Diego will light up in honor of WPPD on March 23 to raise visibility for the global campaign.
World Periodic Paralysis Day highlights the needs of individuals living with skeletal muscle channelopathies, including periodic paralysis, non-dystrophic myotonia, and related rare neuromuscular conditions. By improving recognition and education, the initiative aims to reduce prolonged diagnostic journeys and help patients access appropriate care sooner.
“Living with periodic paralysis is not just a medical journey—it’s a daily reality of uncertainty and isolation,” said Cienna Ditri, President of the Periodic Paralysis Association. “Many families have waited decades for answers, missed work and life milestones, and navigated this invisible condition alone. World Periodic Paralysis Day is about making those experiences visible, advocating for faster diagnoses, and ensuring patients and families get the care and support they deserve.”
“Beyond healthcare, we must also address barriers in education, access to care, and daily support,” Ditri added. “This year, we are calling on policymakers to specifically allocate funding to periodic paralysis research for the first time and strengthen policies that help students succeed in school, provide better patient support, ensure access to care, and dignified accessible air travel. By combining lived experience with advocacy and research, we can create meaningful change for the community.”
Primary periodic paralysis is a group of rare genetic conditions characterized by episodes of muscle weakness or temporary paralysis, ranging from mild symptoms to full-body paralysis lasting minutes to days. Episodes may be triggered by rest after exercise, stress, illness, temperature changes, or fluctuations in potassium levels. These disorders are caused by mutations affecting ion channels that regulate muscle function.
Subtypes of primary periodic paralysis include:
March 23 was selected in honor of Karl Friedrich Otto Westphal, the neurologist whose early work contributed to the medical understanding of periodic paralysis.
World Periodic Paralysis Day was established by a coalition of leading organizations and community partners, including:
Planned activities for 2026 include:
“World Periodic Paralysis Day is about more than awareness; it’s about action,” Ditri concluded. “By connecting the voices of patients and families with research, policy, and clinical care, we can accelerate diagnosis, improve care, enhance quality of life, and ensure that everyone affected by periodic paralysis has the resources, support, and dignity they deserve.”
For more information, visit https://worldperiodicparalysisday.com/.
To support awareness, advocacy, and patient programs, visit https://periodicparalysis.networkforgood.com/.
About the Periodic Paralysis Association
The Periodic Paralysis Association is a 501(c)(3) nonprofit organization dedicated to increasing awareness of periodic paralysis, promoting science-based information, and supporting individuals and families affected by these rare disorders.