News


This page will contain news facts

Live informational event (June 13th) on Primary Periodic Paralysis

Dear Member of the Periodic Paralysis Association Mark your calendar! You are invited to attend a FREE live (in-person) informational event on Primary Periodic Paralysis (PPP) sponsored by Strongbridge Biopharma®. This event will feature a Patient Ambassador, Janine G., sharing her journey, as well as insights from a neuromuscular expert who specializes in diagnosis and […]

Posted in News | Comments Off on Live informational event (June 13th) on Primary Periodic Paralysis

Live informational event (May 2nd) on Primary Periodic Paralysis

Dear Member of the Periodic Paralysis Association Mark your calendar! You are invited to attend a FREE live (in-person) informational event on Primary Periodic Paralysis (PPP) sponsored by Strongbridge Biopharma®. This event will feature a Patient Ambassador, Janine G., sharing her journey, as well as insights from a neuromuscular expert who specializes in diagnosis and […]

Posted in News | Comments Off on Live informational event (May 2nd) on Primary Periodic Paralysis

PERIODIC PARALYSIS ASSOCIATION CONFERENCE 2019

October 25-27 Rosen Shingle Creek Hotel 9939 Universal Blvd, Orlando, FL 32819   We are pleased to announce our 2019 PPA Conference to our membership. This is a 3 – day conference and is open to all PPA members, their families, and physicians. There is NO conference fee for the conference and all attendees are […]

Posted in News | Comments Off on PERIODIC PARALYSIS ASSOCIATION CONFERENCE 2019

PPP: Issues in Developing a Comprehensive Treatment Plan

Are there special considerations for addressing acute attacks? What specific strategies have shown promise? These questions and more in this interview with a physician who has also “been there.” Read the full article

Posted in News | Comments Off on PPP: Issues in Developing a Comprehensive Treatment Plan

The Frank Lehmann-Horn Library

Dr. Frank Lehmann-Horn (June 22, 1948 – May 5, 2018) was the leader in so many facets of understanding and treating the periodic paralyses, as well as being especially caring for the daily stresses endured by the patients themselves.  With his passing earlier this year, the Periodic Paralysis Association wanted to create a living tribute […]

Posted in News | Comments Off on The Frank Lehmann-Horn Library

We are delighted to report on the success of the PPA Conference held at the Hilton Dublin Airport Hotel and Conference Center from August 17th through 19th! Over ninety people attended, from places such as Botswana, China, Europe, and the US. The conference was special for many reasons: Firstly, because this was the first time […]

Posted in News | Comments Off on

Ride for Rare Diseases | Up Close With Gabriel and Emily Low

Over the last two months, Gabriel Low has been on a 3,000-mile bike crusade across the United States, raising awareness of PPP (Primary Periodic Paralysis) and all Rare Diseases. Watch this mother and son duo discuss the rare condition that Gabriel was diagnosed with at the age of 6.

Posted in News | Tagged | Comments Off on Ride for Rare Diseases | Up Close With Gabriel and Emily Low

Gabriel Low, triathlete

Dear Fellow PPA Member, It is with the greatest excitement that we share an incredible story with you! Gabriel Low is a 17-year-old competitive triathlete, but not a typical one.  A triathlon combines swimming, bicycling and running in rapid succession, and is not easy for anyone.  He is currently in training for the USA Triathlon […]

Posted in News | Comments Off on Gabriel Low, triathlete

Privacy Policy

The PPA embraces the new California and European Privacy Policy and has created a new policy for the PPA Website.  In this policy, we make it clear how your privacy is protected.  Please read the full text here.

Posted in News | Tagged | Comments Off on Privacy Policy

Frank Lehmann-Horn: June 22, 1948 – May 8, 2018

Dear Periodic Paralysis Community, It is with deepest sorrow that we learned of the passing of Dr. Frank Lehmann-Horn. Frank had struggled with a series of cancers for the past few years, forcing him to give up his lab. He has done so much for periodic paralysis and patients. He pioneered genetic testing, offering it […]

Posted in Geen categorie | Comments Off on Frank Lehmann-Horn: June 22, 1948 – May 8, 2018