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April 17, 2016
Patient Guide is here:  TEA's A Patient Guide to Erythromelalgia is here!!  We have posted it as a PDF for your use as an educational and awareness tool for yourself, family and friends and your health care provider.  Click here: Patient Guide!   You can also order a hard copy of the Guide for a small donation to cover mailing costs. 

March 3, 2016
EM highlighted in pharma company video:  A pharma company has released a video outlining that the company's "discovery team employed creative science and unconventional tools in an effort to transform genetic insights into new potential therapies for pain".  The video includes conversations with a TEA member and Stephen Waxman, MD, PhD - The Passionate Pursuit of Nav 1.7

January 23, 2016
TEA mourns the loss of Jay S. Cohen, MD:  TEA mourns the loss of founding member Jay S. Cohen, M.D., who died Dec. 6, 2015. Dr. Cohen served on TEA’s original board of directors as Medical Consultant shortly after TEA’s founding in 1999 and became Chairman of the Medical Advisory Board after it was formed in 2001, a position he retained until his death.   Dr. Cohen counseled many TEA members by phone and email throughout the years and conducted a very successful TEA-sponsored teleconference “Dr. Cohen on EM” in 2006. He wrote “Current Information on Treating Erythromelalgia,” in 2002, an article made available to the members TEA and revised several times in the next ten years.

Dr. Cohen was a nationally respected expert on prescription medications and natural therapies. His training and interest in pharmacology led to independent research on the causes of medication side effects that result in more than 100,000 deaths and 2 million hospitalizations each year. He noted that a substantial number of people are medication-sensitive, and starting in 1996, published his findings in eight books and medical journals. 
Dr. Cohen's work will continue through the Jay S. Cohen, MD Foundation supported by his book sales and donations.  To donate to the Foundation, follow this link:  jaycohenmd.com.  To make a donation to TEA in Jay's memory, follow this link:  http://www.erythromelalgia.org/Donate.aspx and click on "In Memoriam" under donation options - acknowledgments will be sent to his family c/o the Foundation.

December 31, 2015
25 year old Michigan woman with EM covered in many media outlets:  Awareness of EM spread with the story of a young woman's experiences dealing with constant burning pain since she was a child.  Here is the story as it appeared in Barcroft Media based in the UK:  I am Burning Alive: Girl Suffers from Rare Condition.  The story was also covered by UK version of the Huffington Post and Cosmopolitan.

November 9, 2015
New treatment article added to TEA's Article library:  A "Research Letter" has been published by JAMA Dermatology summarizing the response of patients at Mayo Clinic's Dermatology Department to topical midodrine hydrochloride.  The study follows twelve patients over two years and was approved by the Mayo Clinic's Institutional Review Board.  Read the full article:  Topically Applied Midodrine.

January 1, 2015
Pfizer reports EM research findings at pain conference:  Pfizer Neusentis, a UK-based research division of the global pharmaceutical company, presented findings from two 2013 studies at a recent meeting of the International Association for the Study of Pain. One study of five people with inherited EM found most responded well to an experimental drug and experienced less heat-induced pain on days when they received the drug compared to when they received a placebo. Performed at the Pfizer clinical research unit in New Haven, CT, U.S., the study was made possible by the collaboration between Pfizer and the Yale research group led by Stephen Waxman, M.D., Ph.D., according to Ruth McKernan, M.D., Chief Scientific Officer at Neusentis. Full article.

December 1, 2014
Erythromelalgia used as introduction in major online magazine article:  The article found on AmericanScientific.com is about the discovery of molecular pathways specific to pain has revealed new targets for drug development.  Read the article now:  Pain That Won't Quit.

October 15, 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.

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 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

 

TEA’s mission is to empower all those affected by EM to improve their quality of life.

 

TEA provides education, awareness and community through our website, member services program, newsletter, social media presence and networking programs.

TEA promotes research through relationships with academic researchers, clinicians and pharma companies with interest in EM. TEA also raises funds to support EM research. 

 

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.


 
 

 

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