# The Erythromelalgia ASSOCIATION? **URL:** \ **Category:** General\ **Created:** [May 28, 2013, 9:12pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413 "2013-05-28T21:12:26Z")\ **Posts on this page:** 16\ **Page:** 1
**Author:** ![pamelag](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/pamelag/32/174_2.png) [@pamelag](https://forum.livingwitherythromelalgia.org/u/pamelag)\ **Post date:** [May 28, 2013, 9:12pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/1 "2013-05-28T21:12:26Z")
Is anyone a member of The Erythromelalgia Association... [www.burningfeet.org?](http://www.burningfeet.org?) I understand that their primary goal is to raise awareness and research funding for EM..... ---
**Author:** ![Ellie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/ellie/32/430_2.png) [@Ellie](https://forum.livingwitherythromelalgia.org/u/Ellie)\ **Post date:** [May 28, 2013, 9:51pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/2 "2013-05-28T21:51:01Z")
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. ---
**Author:** ![Scott\_Orn](https://avatars.discourse-cdn.com/v4/letter/s/7993a0/32.png) [@Scott\_Orn](https://forum.livingwitherythromelalgia.org/u/Scott_Orn)\ **Post date:** [May 29, 2013, 8:47pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/3 "2013-05-29T20:47:38Z")
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 ---
**Author:** ![Meredith\_B\_D](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/meredith_b_d/32/440_2.png) [@Meredith\_B\_D](https://forum.livingwitherythromelalgia.org/u/Meredith_B_D)\ **Post date:** [May 31, 2013, 6:17pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/4 "2013-05-31T18:17:36Z")
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. ---
**Author:** ![Ellie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/ellie/32/430_2.png) [@Ellie](https://forum.livingwitherythromelalgia.org/u/Ellie)\ **Post date:** [May 31, 2013, 9:46pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/5 "2013-05-31T21:46:41Z")
Scott, I'll check into this. Thanks for asking. ---
**Author:** ![Scott\_Orn](https://avatars.discourse-cdn.com/v4/letter/s/7993a0/32.png) [@Scott\_Orn](https://forum.livingwitherythromelalgia.org/u/Scott_Orn)\ **Post date:** [June 3, 2013, 7:41pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/6 "2013-06-03T19:41:57Z")
thanks Ellie & Meredith! ---
**Author:** ![Dominique](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/dominique/32/177_2.png) [@Dominique](https://forum.livingwitherythromelalgia.org/u/Dominique)\ **Post date:** [June 4, 2013, 1:30am UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/7 "2013-06-04T01:30:03Z")
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! ---
**Author:** ![Scott\_Orn](https://avatars.discourse-cdn.com/v4/letter/s/7993a0/32.png) [@Scott\_Orn](https://forum.livingwitherythromelalgia.org/u/Scott_Orn)\ **Post date:** [June 4, 2013, 6:32pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/8 "2013-06-04T18:32:19Z")
well said Dominque! and thanks for your support. :) ---
**Author:** ![Ellie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/ellie/32/430_2.png) [@Ellie](https://forum.livingwitherythromelalgia.org/u/Ellie)\ **Post date:** [June 6, 2013, 3:15am UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/9 "2013-06-06T03:15:55Z")
Yep, Scott, TEA links to this site as a support group for people with EM. ---
**Author:** ![Ellie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/ellie/32/430_2.png) [@Ellie](https://forum.livingwitherythromelalgia.org/u/Ellie)\ **Post date:** [June 13, 2013, 3:37pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/10 "2013-06-13T15:37:42Z")
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](https://www.facebook.com/erythromelalgia) -- you can "Like" the page on Facebook to get updates on EM and to support raising awareness of EM. ---
**Author:** ![Scott\_Orn](https://avatars.discourse-cdn.com/v4/letter/s/7993a0/32.png) [@Scott\_Orn](https://forum.livingwitherythromelalgia.org/u/Scott_Orn)\ **Post date:** [June 13, 2013, 4:29pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/11 "2013-06-13T16:29:26Z")
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! ---
**Author:** ![Scott\_Orn](https://avatars.discourse-cdn.com/v4/letter/s/7993a0/32.png) [@Scott\_Orn](https://forum.livingwitherythromelalgia.org/u/Scott_Orn)\ **Post date:** [June 13, 2013, 4:37pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/12 "2013-06-13T16:37:46Z")
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](http://forum.livingwitherythromelalgia.org/) 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](http://techcrunch.com/2013/05/31/big-impact-on-a-small-budget-bens-friends-wants-to-build-a-web-mobile-support-network-for-every-rare-disease/) - TechCrunch is the world's largest tech news blog - [Harvard Business Review Editorial](http://blogs.hbr.org/cs/2013/03/deliver_big_impact_on_a_small.html) - they allowed me to write this and tell our story - [Houston Chronicle Article](http://www.chron.com/news/health/article/Med-student-starts-website-for-patients-with-rare-4543614.php) - tells our story, especially Ben's and how he has gone back to med school to become a doctor. Thanks! Scott ---
**Author:** ![Ellie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/ellie/32/430_2.png) [@Ellie](https://forum.livingwitherythromelalgia.org/u/Ellie)\ **Post date:** [June 13, 2013, 4:50pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/13 "2013-06-13T16:50:39Z")
Hey Scott, This site is linked under "Support Groups" on TEA's website, here: [http://www.erythromelalgia.org/WhatisEM/Links.aspx](http://www.erythromelalgia.org/WhatisEM/Links.aspx) It's how I first found this page! ---
**Author:** ![Scott\_Orn](https://avatars.discourse-cdn.com/v4/letter/s/7993a0/32.png) [@Scott\_Orn](https://forum.livingwitherythromelalgia.org/u/Scott_Orn)\ **Post date:** [June 13, 2013, 4:52pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/14 "2013-06-13T16:52:36Z")
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. :( ---
**Author:** ![Ellie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/ellie/32/430_2.png) [@Ellie](https://forum.livingwitherythromelalgia.org/u/Ellie)\ **Post date:** [June 13, 2013, 5:01pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/15 "2013-06-13T17:01:26Z")
Hey Scott, I am checking into the broken email issue. I know the following address works for them: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■ ---
**Author:** ![Scott\_Orn](https://avatars.discourse-cdn.com/v4/letter/s/7993a0/32.png) [@Scott\_Orn](https://forum.livingwitherythromelalgia.org/u/Scott_Orn)\ **Post date:** [June 13, 2013, 5:02pm UTC](https://forum.livingwitherythromelalgia.org/t/the-erythromelalgia-association/413/16 "2013-06-13T17:02:44Z")
this is the bad one listed: [■■■■■■■■■■■■■■■■■■■■■■■■■](https://mail.google.com/mail/?view=cm&fs=1&tf=1&to=%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0 "Email Us")