News

This page will contain news facts

Webinar on Affordable Care Act Enrollment: What You Need to Know

With the December 15th deadline to select an Affordable Care Act (ACA) health plan looming, the National Organization for Rare Disorders (NORD) is holding a webinar, sponsored by Strongbridge BiopharmaTM, to aid all rare disease patients and caregivers in navigating what may be a confusing process.   Join NORD’s policy team on Wednesday, November 15 […]

Posted in News | Comments Off on Webinar on Affordable Care Act Enrollment: What You Need to Know

Strongbridge offers genetic testing

 

Posted in News | Tagged | Comments Off on Strongbridge offers genetic testing

Looking back at a fabulous Scottsdale conference

The 2017 Scottsdale conference was a great success. Look back at the wonderful summary Jeff Albertson wrote and enjoy the photos and recorded webstream again.   Go to the conference page    

Posted in News | Tagged | Comments Off on Looking back at a fabulous Scottsdale conference

Primary Periodic Paralysis Webinar

Mark your calendars for Wednesday, October 18th from 7-8pm (ET). (6-7pm CT, 5-6pm MT, 4-5pm PT). Join us for an educational webinar on Primary Periodic Paralysis hosted by Dr. Nicholas Johnson, MD (University of Utah) and sponsored by Strongbridge BiopharmaTM. Dr. Johnson will provide an overview of Primary Periodic Paralysis including: • Signs and symptoms […]

Posted in News | Tagged | Comments Off on Primary Periodic Paralysis Webinar

Recorded Webstream and Photos Scottsdale 2017 online

The second day of the PPA Scottsdale Conference 2017 is successfully ended. To give you an impression of the conference, check out the photos and webstream. The recorded webstream will be divided into the different lectures in November. For now the whole stream is available.

Posted in News | Tagged | Comments Off on Recorded Webstream and Photos Scottsdale 2017 online

Video stream during Conference

During the conference a live video stream will be available for those who cannot attend. The stream is available on our site. It will be interactive due to the possibility to chat with the webmaster during the lectures.   No registration is needed. Just click on the button and enjoy watching the conference.     […]

Posted in News | Tagged | Comments Off on Video stream during Conference

The Balancing Act – Full episode

The Balancing Act Primary Periodic Paralysis (PPP) is a rare condition that causes attacks that affect your muscles, resulting in extreme muscle weakness or temporary paralysis, most often with an inability to stand independently, or even sit up. Primary periodic paralysis is not just one condition, but a group of inherited neuromuscular disorders. Although this […]

Posted in News | Tagged | Comments Off on The Balancing Act – Full episode