News


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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 […]

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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.

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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 […]

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Primary Periodic Paralysis: A Physician’s Personal Experience as a Patient

Primary periodic paralysis (PP) is a group of autosomal dominant channelopathies that cause episodes of paralysis or muscle weakness that have many triggers including medication, exercise, certain foods, or stress. There is wide variation in the age of symptom onset, ranging from just after birth to late adulthood, although patients typically begin to experience attacks before age […]

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Registration of new members reviewed

Part of the registration is confirming your registration through a received link in your mailbox. Since a lot of new members were redirected to a not working page and therefore were not able to finish the registration, we reviewed (and debugged) the registration process. As a webmaster I’m happy to be able to announce that […]

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New registration method

The PPA has made it easier to become a member. Everybody is allowed to register on the site without any moderation. After registration, the ‘member-to-be’ receives a confirmation email on the given mail address. This mail contains a link with which the membership can be confirmed and a password can be created. If you did […]

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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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