The Evans Syndrome Community Network (ESCN) is a non-profit organization. Our mission is to provide a safe place for networking between individuals whose lives have been impacted by Evans Syndrome (ES); to make available scientific and educational material, online and in medical environments, fostering learning about ES among our Community and the general public. We will assist families affected by ES with travel, lodging, and medical expenses; collaborate with other organizations that share our vision, and fund autoimmune research to benefit our international Community.
ESCN on Facebook is open to anyone diagnosed with Evans Syndrome (ES), as well as those whose lives have been touched by a person with ES. We hope to provide a way of networking with other ES people. Share your stories; experiences with physicians; medications you have used; which treatments have or have not worked for you; and so on. We hope to provide good information, as well as mental and emotional support in knowing that you are not alone in this illness.
We have opened a new social networking site at http://rareconnect.org. This wonderful tool has been provided to us through generous grants to the National Organization of Rare Diseases (NORD) and Rare Diseases Europe (EURORDIS). Our Facebook page will remain in tact, however we want you to know that RareConnect is available to you and it is a private network, unlike Facebook.
Since you found us here, you probably are at a point in your life where you’re asking a lot of questions and feeling a little frustrated. You may even feel a little scared. Don’t worry! We are here to help you. Please join our conversation, and try to keep your questions and comments honest and positive.
Our group is not administered by healthcare professionals, and should never take the place of your physician(s) or their opinion(s). We are every-day people, just like you. Our members are all ages, from every continent, and every level of education.
Evans Syndrome is an uncommon condition defined by the combination (either concurrently or sequentially) of an attack on two or more lines of blood, including red blood cells (Autoimmune Hemolytic anemia), platelets (Ideopathic Thrombocytopenia or ITP), and white blood cells, also known as leukocytes. This occurs when the immune system mistakenly targets these cells for destruction, and the spleen subsequently destroys them. Autoimmune cytopenia can be a sign of systemic autoimmune disease, such as Lupus or other connective tissue disorder, and the patient should be tested appropriately. (Mikhail Shtivelband, MD, PhD, and http://www.ncbi.nlm.nih.gov/pubmed/16398647)
Please take some time to complete our surveys (as they apply to you), located here:
You may be interested in reading some of our blog posts, which can be found here. http://evanssyndrome.blogspot.com/. We use the blog to share personal stories about our experiences with Evans Syndrome. We're always looking for new material to post, so if you would like to share, please let us know.
We have a real need for people who want to become more involved with the Evans Syndrome Community Network. If you would like to volunteer your skill or ability, please contact us directly.
Please feel free to contact us directly, for any reason.
ESCN's Motto: Together we will make a difference, standing shoulder to shoulder.
Join us, and make a difference.
Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.
