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October 2014

Tufts & Astrazeneca Looking for Post Doc Candidates for EM Research:  Erythromelalgia has gained the attention of researchers at a Boston university and a large pharmaceutical company.  See this  posting for a post doc position recently found on LinkedIn.com.

December 11, 2013

New "Research Studies" Page:  Check out TEA's new Research Studies page (hover your mouse over Research in the menu above and click on Research Studies).  There is a lot of activity in the EM world these days and researchers are requesting TEA to announce them as some EM patients could be eligible for participation in the projects.  TEA is not associated with these projects and cannot answers questions about them.  All projects listed on this website have contact information for the researchers if you have questions or want to find out if you are eligible.

October 15, 2013

Pfizer Neusentis completes clinical trial:   
Pfizer Neusentis (a research unit of Pfizer) has recently concluded a clinical trial in subjects with inherited EM (IEM) with the research unit’s novel sodium channel blocker.  (Please click here for further explanation of the benefits of IEM research for the entire EM community).  Full results of the trial will be published in due course.Prior to this trial, Pfizer conducted an “enabler” study in collaboration with Prof Steve Waxman and his group at Yale University. The “enabler” study was a non-drug investigation involving IEM patients that provided information about the history of the disease and helped create a more informed drug study that took place after the “enabler” study.Pfizer Neusentis also took donated blood samples from some IEM patients to begin cutting edge experiments to provide greater understanding of the sensory nerves in EM and how they are different from “non-affected” individuals.Click here to see full memo from Pfizer Neusentis Chief Scientific Officer, Dr. Ruth McKernan, explaining the studies and experiments in a bit more detail and expressing thanks to the EM community for their support in this work.

August 19, 2013

Orphan Drug Status for Xenon/Teva Drug:  The FDA recently granted orphan drug designation to TEVA and Xenon Pharmaceuticals Inc. for their pain management candidate, XEN402. Orphan drug status was granted for the treatment of pain associated with erythromelalgia (EM).  XEN402 is in a phase II study for a variety of pain-related disorders. XEN402 is being studied in both topical and oral forms.  A phase II trial on topical XEN402, which evaluated its effectiveness in reducing pain related to post herpetic neuralgia, showed statistically significant data. Source:  www.nasdaq.com 

July 1, 2013Like us on Facebook!  TEA has a Facebook page, which you can follow to stay on the frontline of EM treatment and research and help raise awareness of our rare disorder. Click this link to "like" TEA's page www.facebook.com/erythromelalgia

August 21, 2012

Winners of TEA's Art Contest Announced:  Artwork submitted by TEA members depicting the "pain of EM" will be used by the Yale Research team at a presentation at the annual Neuroscience Society Meeting this October.   Contest background, artwork and judges picks available now!  TEA Art Contest background and results

 

The Erythromelalgia Association's Mission

The Erythromelalgia Association is an all-volunteer, international, nonprofit organization that works to identify, educate and support all those whose lives are affected by erythromelalgia (EM).  We spread awareness of EM by providing educational resources about this rare disorder to the public and to those who diagnose and treat EM, and we raise funds to further meaningful research efforts.

 

DISCLAIMER:  The material on this website is for informational purposes only. It does not replace the advice or counsel of a doctor or health care professional. You should consult with, and rely only on the advice of, your physician or health care professional.

 
 

 

CONTACT memberservices@burningfeet.org
for offline support services and help with all TEA related questions

 

Bracelet Fundraiser

Bracelet Fundraiser & Awareness Campaign

founded by John and Danielle Ravetti
Click here for more information - Select the last option - Bracelet Fundraiser

 

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