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Recent News

March 11, 2014
Support offered for students with frequent absences from school due to EM symptoms:    Christine Keisling, TEA member, is a health and wellness professional and advocate (over 20 years experience) has asked TEA to announce her willingness to help guide parents and children through the special education process when children have frequent absences from school, are home bound or hospitalized because of EM.  Guidelines vary from state to state, but Christine can offer guidelines and point families in the right direction.  Christine’s email address is:  Keislinc@gmail.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, 2013
Like 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 has as its mission to educate and support those suffering EM’s painful symptoms; to help fund research leading to a cure for this rare disorder; to raise public awareness of EM; and to educate healthcare practitioners to recognize and diagnose EM. Because most physicians are not familiar with erythromelalgia symptoms and/or treatment there is a great need to educate the medical community as well.

 

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.

 
 

 

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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