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Rare Disease Day 2018

Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care. On 28 February 2018, the tenth edition of Rare Disease Day will see thousands of people from all over the world come together to advocate for greater patient involvement in research on rare diseases. Over the […]

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Registration Dublin Conference reopened

Dear Members, Registration for the 2018 Dublin Conference encountered some problems with sending the confirmation mails. A problem in our mail server was the cause of this problem. This seems to be solved. registration for the conference is now reopened. Our apologies for the inconvenience. Please visit our announcement page again. PPA Webmaster

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Announcement for 2018 Conference in Dublin

We are very excited to announce that the PPA will be going to Dublin, Ireland on August 17-19 this year for a conference. The registration for the conference is FREE, but you still have to register to reserve your place at the conference. This registration process is now open. Make sure you register ALL family members attending […]

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Rare Disease Day at NIH 2018

  Rare Disease Day® takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Each year, NCATS and the NIH Clinical Center sponsor Rare Disease Day at NIH as part of this global observance. […]

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New photos available of the Scottsdale conference

We have added around 80 new photos of the PPA 2017 Scottsdale conference. If you want to walk on memory lane, click here.  

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New revision of ‘Hypokalemic periodic paralysis – an owner’s manual’ published

A new revision of the ‘Hypokalemic periodic paralysis – an owner’s manual’ is published on our site.  A full update on text and links is now available. To read: please click here

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Amazon Smile helps PPA

As you do your last – minute holiday shopping please be aware that the periodic paralysis association is registered with Amazon Smile. Simply follow the directions on our website to use Amazon Smile when shopping at any time of the year. There is no additional cost to you for items purchased, Amazon simply donates to […]

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All lectures are on line

For those who are interested in reviewing the lectures of our speakers in Scottsdale, all videos are online. Please go to the conference page

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Participation in an investigational panel discussion

Dear PPA Membership, The Periodic Paralysis Association has the opportunity to participate in an investigational panel discussion surrounding the use of Keveyis. You DO NOT have to be a patient using Keveyis to participate. For this panel we need to identify 4 people who are willing to speak in front of a small audience and […]

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Strongbridge offers genetic testing

 

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