Where can I find a support group or meet others who have had a DVT, PE, or clotting disorder?

Marie B. Walker
January, 2007

I often get questions at ClotCare from individuals looking for someone who has shared their medical experience. There are quite a few forums for support out there, but it may be difficult to find them. Thus, I have created this FAQ to help you find the support you need.

First, check with your anticoagulation clinician or the healthcare provider who has cared for your clot-related condition. Your doctor may be able to direct you to a support group in your geographical area. If there is not a support group in your area, talk to your healthcare provider about the possibility of starting one. If you do start a support group, please let ClotCare know and we will be happy to include your group in our list. We have posted information about a local support group at Brigham and Women's Hospital in Boston that is run by two of ClotCare's Editorial Board Members, Samuel Z. Goldhaber, M.D. and Ruth B. Morrison, RN, BSN, CVN. You can learn about their support group on ClotCare at http://www.clotcare.com/clotcare/
pulmonaryembolismsupportgroup.aspx.

If you do not have a local support group available to you, you are not out of luck. There are a number of online support sites. I have provided some links below to several sites. If you know of a support site that is not listed, please feel free to tell me about it by sending an email to webmaster@clotcare.com.

Please note that ClotCare is not affiliated with nor does ClotCare endorse the sites listed below. Also, I have often seen exchanges on this type of support forum in which individuals with no medical qualifications present false information as medical fact. Thus, while I certainly understand and appreciate the value of the "support" aspect of these forums, I caution you to be sure you know the source of any medical information you read. Also, if you have questions about any information you have received, you are likely to find the answer here on ClotCare, and you are always welcome to submit a question to our medical experts by sending an email to webmaster@clotcare.com.

Online Support Forums (In no particular order)

• http://health.groups.yahoo.com/group/thrombosis
  
  
• http://health.groups.yahoo.com/group/PulmonaryEmbolism
  
  
• http://health.groups.yahoo.com/group/APS-Syndrome
  
  
• http://health.groups.yahoo.com/group/
  bloodclotting-disorders-thrombophilia-HughesSyndrome
  
  
• http://www.fvleiden.org
  
  
• http://www.apsforum.com
  
  
• http://groups.msn.com/BloodClotSurvivorsDVTPE
  
  
• http://www.facebook.com/group.php?gid=30285447238

Share Your DVT Story

If you have experienced a deep vein thrombosis (DVT) and would like to share your story with others, you may share your story with the Coalition to Prevent Deep-Vein Thrombosis via their website at https://www.preventdvt.org/aboutDvt/story.aspx.