You are not alone.
After experiencing a blood clot, it’s normal to have a lot of questions. Many people are left feeling confused about why this happened to them and anxious about it happening again. NATF is here to be your support system. We are proud to offer Boston, Kansas City, MO and Chicago-based in-person support groups, as well as an online support group.
If you are interested in starting a support group in your area, please email firstname.lastname@example.org.
NATF’s Online Support Group offers patients the opportunity to share common concerns, offer support to one-another, and learn up-to-date and accurate information on research in the field of VTE. Each month is hosted by a different doctor, who presents on important new information for patients with blood clots.
NATF invites different physicians to serve as our moderators each month, with each presenting their own updates in thrombosis medicine and offering new perspectives. Join us and other blood clot survivors for these rewarding and educational events. Family members and friends of those dealing with blood clots are also invited to attend. All you need to join is a computer with internet access or phone!
To receive emails about how to sign up for different online sessions, please fill out the form below:
- July 9, 2019 at 7 p.m. EST – Dr. Steven Deitelzweig will discuss the good, the bad, and the ugly of atrial fibrillation
- August 13, 2019 at 7 p.m. EST – Dr. Alec Schmaier will present an update of treatment options for VTE and related CV issues
- September 17, 2019 at 7 p.m. EST – Dr. Geoff Barnes will review a recent clinical trial related to VTE
- October 1, 2019 at 7 p.m. EST – Drs. Umberto Campia, Jean Connors, and Gregory Piazza will host a “Panel Discussion”
- November 26, 2019 at 7 p.m. EST – Dr. David Jenkins will discuss supplemental vitamins for CV disease prevention and treatment
- December 10, 2019 at 7 p.m. EST – Dr. Arvind Pandey will host “I’ve had a DVT/PE! Now what?”
Our online meetings are hosted through a program called GoToWebinar. After signing up with NATF above, participants will receive an email from GoToWebinar about each online support group and given the chance to register each month. You must fill out the GoToWebinar registration in order to get the support group log in information.
You can watch recordings of our past meetings by following the links listed below:
- Dr. Margaret Fang- “Update on Anticoagulant Reversal Agents”
- Dr. John Groarke- “Cancer and VTE: What’s the Connection?”
- Dr. Christian Ruff- “Genetics and Blood Clots: What’s in the Genes?”
- Dr. Elaine Hylek- “Considerations for Stopping an Anticoagulant”
- Dr. Suresh Vedanthem – “An Update on Post-Thrombotic Syndrome”
- Dr. Ebrahim Barkoudah – “Avoiding Blood Clots in the Hospital”
- Dr. Samuel Berkman – “Bleeding on Anticoagulants”
- Gary Raskob, PhD – “World Thrombosis Day”
- Dr. Umberto Campia – “Peripheral Arterial Disease: Connecting Leg Health and Heart Health”
- Dr. Gregory Piazza – “Blood Clots Q&A”
- Lynn Oertel, MS, NP-BC, CACP – “Life on a Blood Thinner: Insights and Advice from an Anticoagulant Specialist”
- Dr. Marie Gerhard-Herman – “Simple Steps to Developing a Beneficial Response to Stress”
- Dr. Alec Schmaier – “Demystifying the Treatment Options for Blood Clots”
- Dr. Aaron Kithcart – “Lifestyle Changes After a Blood Clot”
- Dr. Rachel Rosovsky – “The Importance of Follow Up Care”
- Drs. William Auger and James Welker – CTEPH Support Group
- Dr. Suresh Vedantham – “Update on Post-Thrombotic Syndrome”
- Dr. Elaine Hylek – “Strategies to Minimizing Bleeding on Anticoagulant Medicine”
- Dr. Vincent Pellegrini – “Patient Preferences on Anticoagulation and Surgery”
- Dr. Brett Carroll – “PERT: The Role of a Pulmonary Embolism Response Team”
- Dr. Jeffrey Weitz – “A Look at the EINSTEIN Choice Trial”
- Dr. Umberto Campia – “The Genetics of Thrombosis”
- Dr. James Welker – “Recommended Follow-Up Care after a Blood Clot”
- Dr. Gregory Piazza – “Ask An Expert”
- John Fanikos, RPh, MBA – “Trends in Anticoagulation Research: What do they mean for Patients?”
- Dr. Susan Kahn – “Coping with the Long-Term Effects of DVT: The Post-Thrombotic Syndrome”
- Dr. Geoff Barnes – “Shared Decision Making”
CTEPH Online Support Group
Looking for more information about CTEPH? Join Drs. William Auger and James Welker as they discuss the often misdiagnosed and difficult to treat condition known as CTEPH or chronic thromboembolic pulmonary hypertension.
- Please check back for our next CTEPH Support Group date
Recordings of Past Support Groups:
Support Group meetings begin at 7:00 pm EST, and are held at the Brigham and Women’s Hospital in Boston on the 5th floor of the Shapiro building. Support groups are open-enrollment. To register, please email Kathryn Mikkelsen at email@example.com.
Upcoming Boston Support Group Meetings
- will resume in September
Illness-focused support groups can be very beneficial to patients. NATF’s Blood Clot support groups allow patients to:
- Find accurate information about blood clots
- Learn about current research from an expert
- Share first-hand experiences with other patients
- Help one another cope with the physical and psychological challenges of a clot
New York City, NY
Let’s Heal Together – A Post Thrombotic Limb Support Group is a newly-formed, monthly support group for New York City based patients, family members, and caregivers affected by post thrombotic syndrome. If you’ve suffered from a deep vein thrombosis and your leg has just never felt the same, join this support group.
Upcoming New York City Support Meetings
- June 19 at 7PM
Meetings will take place at NYU Langone Health in New York City at 660 First Avenue on the 3rd floor in the large conference room.
For more information and to register, please email Heather Paulson-Soussou at firstname.lastname@example.org
Kansas City, MO
Independence From Blood Clots is a newly-formed, monthly support group for local, Independence, MO blood clot patients, family members, and caregivers. Meetings take place at The City House, 14300 E US Highway 40, Independence, Missouri 64055.
Upcoming Kansas City Support Group Meetings
- Please check back for a later date.
For more information and to register, please email email@example.com
Drs. Joseph Caprini and Alfonso Tafur of NorthShore University HealthSystem host a DVT & PE Support Group in Chicago, IL.
Upcoming Chicago Support Group Meetings
- will resume in the fall
Each meeting starts with a meet-and-greet for the first half hour during which time attendees can visit the compression and Coumadin corners. Then we have a short 20 minute presentation on a pertinent topic such as:
- Genetic blood disorders
- DVT/PE risk factors
- DVT/PE prevention
- DVT/PE symptoms
- Life changes after a DVT/PE
The meeting features an anticoagulation clinic corner staffed by pharmacists from the three anticoagulation clinics at NorthShore University HealthSystem. Attendees can visit the clinic corner and get information on anticoagulant drugs particularly Coumadin.
There is also a stocking/compression corner featuring expert fitters, to answer questions and concerns as well as demonstrate a variety of products that can be helpful for patients with leg swelling, blood clots, and the ever-popular travel-related stockings.
Interested in starting a Blood Clot Support Group? NATF can help
NATF is looking for patients, physicians, nurses, pharmacists, or family members to help start support groups across North America.
With short appointment times, it can be difficult for patients to get the answers and support they need to understand and process their diagnosis. Patients that supplement appointments with a support group feel more confident, more knowledgeable, and more hopeful about their diagnosis.
If you’re interested in starting your own Blood Clot Support Group, contact us at firstname.lastname@example.org or at 617-730-4120.
History of NATF’s Blood Clot In-Person Support Groups
Mark Lindsay discusses the impact that NATF’s In-Person Blood Clot Support Group has had on his recovery.
For 24 years Dr. Samuel Z. Goldhaber (NATF President) and Ruth Morrison, RN, BSN (member, NATF Patient Advocacy Committee) have held a monthly venous thromboembolism (VTE) Support Group at Brigham and Women’s Hospital. A typical meeting has between 10-15 patient attendees. Our attendees represent all stages of recovery: some have suffered a thromboembolic event decades ago and enjoy coming to the meeting to learn new information and lend support to other patients; others are newly diagnosed and still overwhelmed with their diagnosis and onslaught of new information. We have enjoyed a diverse mix of both men and women, young and elderly (ages range from 17 to well into the 80s). The feedback we receive from our attendees is that the support group has been invaluable to their recovery, both physically and mentally:
- “Having a doctor explain the new drugs on the market in a way I can easily understand them has helped me to have discussions with my doctor about the best treatment for me.”
- “Learning about the disease and that others have the same problems. That there is help and support close by.”
- “Knowing that life goes on pretty much as before for the vast majority of patients with only minimal daily inconveniences.”
- “I like hearing about the current status of research in this area.”
- “It was extremely beneficial for me to hear that others had similar fears that I had. Just being able to express these fears and feelings to others was a tremendous help to me.