News


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NORD webinar on self advocacy and care coordination

Our partners at Strongbridge Biopharma are sponsoring an upcoming NORD webinar on self advocacy and care coordination.  Here are the details.   NORD’s RareEDU® webinars cover topics important to patients and caregivers. These webinars are free and intended for everyone to access. Do you want to learn how to better advocate for yourself in a …

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Forum incorporated in Web Site

The forum is now incorporated in the site. All visitors can read the posts, members can create new topics and reply to existing topics. In the next comming days, more topics will be imported from the old forum.

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Changed services on the PPA Website

We are happy to tell you about some updates to our PPA website, which will better serve people searching for information. Here are some of the changes: As a PPA member, you can read and post in the new Forum. Non-members cannot post. Membership is not required to register for a conference The listserv will …

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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 …

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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 …

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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 …

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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

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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 …

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PPA Dublin Conference 2018

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 …

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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.

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