Category: News

Internal mail problem solved

Due to changes in the settings at our hosting partner, the PPA was not able to send internal mail anymore. This has consequences for the ‘As the Experts’ functionality and the registration for the 2020 conference. The problems are solved yet….

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Dr. Jake Levitt steps down as President of the PPA

It is with a heavy heart that we must say goodbye to Dr. Jake Levitt as he steps down as President of the PPA after so many years. Jake has been a vital part of the organization in many ways: as a patient advocate, as a medical resource for our patients, and as a friend…

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The registration for our Chicago PPA Conference 2020 is now open

Dear PPA Members, The registration for our Chicago PPA Conference 2020 is now open on the PPA website. We know many of you have made hotel reservations, but you MUST now register with the Periodic Paralysis Association, so we know how many people to expect. You can register your entire group at one time on…

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Renewed site announcement

One of the most important things that we at the PPA can do is to continue working on ways to remain in contact with you in the best possible way. To that end, we are proud and happy to reveal our updated website!  You will immediately see our new look and discover the ease of…

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PPA has a new Treasurer

As we all know, change is certain to happen, and the PPA Board is a recent example. After many years of extremely dedicated service to you, Shelley Shifman has stepped down as our esteemed Treasurer. She will now be free to spend time with her expanding family. Shelley has played a vital role in the…

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2019 PPA Conference was a tremendous success!

We are happy to report that our Orlando 2019 PPA Conference was a tremendous success! Held at the Rosen Shingle Creek Resort, we had a record 120 attendees for the three-day event. Excellent presentations were given by the top names in periodic paralysis, including Drs.Jack Tarleton, Todd Bell, Stephen Lewis, Steve Cannon, William Catterall, Sub…

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Strongbridge Dinner Event – Oct. 25th in Orlando, FL

Dear Member of the PPA, You are invited to attend an informational dinner program on Friday, October 25th at 6pm in Orlando, FL during the free evening of the PPA Conference. This program is sponsored by Strongbridge Biopharma® and will focus on the power and importance of advocacy, education, and support when living with Primary Periodic Paralysis (PPP)….

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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 healthcare…

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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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