Periodic Paralysis Association Unites Global Community Igniting Inaugural Awareness Day for Ultra Rare Neuromuscular Condition.

The Periodic Paralysis Association, together with a coalition of over seven organizations and support from Xeris Pharmaceuticals® as the lead sponsor is celebrating the inaugural World Periodic Paralysis Day on March 23rd. World Periodic Paralysis Day seeks to reduce delays in diagnosis, increase public and medical knowledge about Primary Periodic Paralysis (PPP), and foster a supportive global community by providing access to education materials and resources for health care professionals and people living with PPP, as well as through an inaugural global awareness campaign to educate people on this awareness day. March 23^rd is chosen to honor the neurologist who first extensively described PPP, Karl Friedrich Otto Westphal. This awareness day is established by a coalition of nonprofits, patients, caregivers, and advocates, including Muscular Dystrophy Association, American Neuromuscular Foundation, American Association of Neuromuscular and Electrodiagnostic Medicine, Chronic Disease Day, Periodic Paralysis International, and the Periodic Paralysis Support Network.

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Primary Periodic Paralysis is a rare genetic condition impacting 3,000-4,000 Americans characterized by repeated episodes of extreme muscle weakness or temporary paralysis, often triggered by specific factors. These episodes, or “attacks,” can vary in intensity from mild weakness to full paralysis and can last anywhere from minutes to days. Muscle cells require particles called ions—such as potassium, calcium, and sodium—to function properly. These ions move in and out of the cell through structures called ion channels. In people living with PPP, genetic mutations can cause these ion channels to malfunction, making it difficult for muscles to move. While symptoms are episodic, they can have a profound impact on daily life. Periodic Paralysis includes several subtypes:

• Hypokalemic Periodic Paralysis
• Hyperkalemic Periodic Paralysis
• Andersen Tawil Syndrome
• Thyrotoxic Periodic Paralysis

World Periodic Paralysis Day will shine a spotlight on the challenges of living with PPP and the urgent need for improved diagnosis, treatment, and care. Together, we aim to:

• Reduce delays in diagnosis
• Increase public and medical knowledge about periodic paralysis
• Foster a supportive global community

By amplifying patient voices and sharing stories, we can break the silence, reduce stigma, and inspire progress. Opportunities to get involved on World Periodic Paralysis Day include:

• Become an Ambassador, as a power partner you will play a vital role in spreading awareness and advocating for the periodic paralysis community www.WorldPeriodicParalysisDay.com
• Wear Your Shirt With Pride: https://shop.printyourcause.com/campaigns/WorldPeriodicParalysisDay
• Participate in Activities: Xeris Pharmaceuticals® is hosting an upcoming virtual event. Hear from PPP Patient Mentors & Engagers. Gain valuable insights, and connect with others living with Periodic Paralysis (PP). Together, we’ll explore how to raise awareness for this rare and often misdiagnosed condition, while building meaningful relationships within the PP community. You won’t want to miss this opportunity to connect with us on World Periodic Paralysis Day! This event is 3pm ET/ 2pm CT on March 23, 2025, register here: https://event.on24.com/wcc/r/4861973/F38377D90D9C647555A90A67B5F13B95
• Share Your Story and find others like you all around the world: https://worldperiodicparalysisday.com/share-your-pp-stories/
• Donate: https://periodicparalysis.org/donate2/
• On Monday, March 24^th the PPA Board of Directors will host a series of virtual meetings to build relationships with Congressional offices to call attention to this ultra-rare disorder.

For more information, educational resources, and additional ways to get involved visit https://worldperiodicparalysisday.com/.

The Periodic Paralysis Association is a 501(c)(3) non-profit organization dedicated to fostering awareness of periodic paralysis, promoting science-based information regarding this class of disorder, and championing the interests of the Periodic Paralysis Community. The organization's programming includes Ask The Experts, the biennial Periodic Paralysis Association Conference, Documentary I Never Fake It: A Medical Odyssey, our initiative to educate medical professionals at industry conferences, in-person patient dinners around the United States, a Docuseries available on YouTube, with more to be announced soon.

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