Is anyone a member of The Erythromelalgia Association... www.burningfeet.org? I understand that their primary goal is to raise awareness and research funding for EM.....
I am a member. Do you have any specific questions? They are definitely reputable. They've been around a long time, and they are a good resource for finding a doctor in your area who deals with EM. The Erythromelalgia Association is run completely by volunteers, and they donate money to research into EM and treatments.
I don't know them Pamela. It would be wonderful if they listed us as a link on their list of support sites.
Ellie - if you know them, would you please ask? that would be helpful to folks out there who haven't found us yet.
thx
Scott
Scott, I think I found this site from a list of links on their site, but I could be mistaken. I don’t always remember how I find websites.
Scott, I'll check into this. Thanks for asking.
thanks Ellie & Meredith!
Yes, I’ve been a member for over two years and have found wealth of important relevant medical information over this time… A MUST for anyone suffering from EM…and it’s free !!! So why not give a look? I have since decided to donate tobthis association every year (as I do this site of course) I do urge you all to go!
well said Dominque! and thanks for your support. :)
Yep, Scott, TEA links to this site as a support group for people with EM.
Hi, all-- I wanted to let you know that The Erythromelalgia Association now has a Facebook page which you can follow to get updates and the latest news on EM.
The page is at http://www.facebook.com/erythromelalgia -- you can "Like" the page on Facebook to get updates on EM and to support raising awareness of EM.
Hi Ellie - do you mind sending me the TEA association webpage with the link? I'm on their site and can't find it. thanks!
I couldn't find the link on the TEA site to ours so I wrote them a little note. Hopefully they reply:
Hi TEA - hope you are well. I wanted to reach out and say hi. I'm the co-founder of Ben's Friends, online support communities. We have an Erythromelalgia community and I was hoping that you could link to our site from yours. A link will make it easier for patients to find us and to find support.
If you would like more info on us, here are a couple articles that people have written on us. We're all volunteers and do this for fun and to help folks. :)
- Techcrunch on Ben's Friends - TechCrunch is the world's largest tech news blog
- Harvard Business Review Editorial - they allowed me to write this and tell our story
- Houston Chronicle Article - tells our story, especially Ben's and how he has gone back to med school to become a doctor.
Thanks!
Scott
Hey Scott,
This site is linked under "Support Groups" on TEA's website, here: http://www.erythromelalgia.org/WhatisEM/Links.aspx
It's how I first found this page!
Ahh, that is wonderful! please tell them thanks if you talk to them. My email bounced back. looks like the email address they have listed on their site doesn't work. :(
Hey Scott,
I am checking into the broken email issue. I know the following address works for them: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■
this is the bad one listed: ■■■■■■■■■■■■■■■■■■■■■■■■■