Welcome! Support groups provide a way for individuals suffering from Mast Cell Diseases ~ and their caregivers ~ to communicate with each other, support each other, provide comfort and often share information that makes their daily lives better. TMS offers a variety of support opportunities, please see the contact listing at the bottom for your specific area.
Local Support Groups: See the contact listing below. Prior to the pandemic with COVID-19, these meet one or more times every year, usually for just a couple of hours, to share experiences… sometimes there is an expert speaker invited and other times it is an informal gathering to share together or meetup for coffee, etc. Currently, our support groups are meeting online.
Its an amazing experience to connect with others on this disease journey and share experiences and tips – and hugs! Find your area’s support group from the list below, you are also welcome to contact/travel to one in another state if there isn’t a Leader in your area yet. Many of these groups also offer facebook peer support groups. Contact them to join meetings/groups or just ask a question.
To hold any of these meetings we need Leaders, so if you don’t see someone listed below, please consider volunteering, you don’t need to be an expert on anything, just willing to help get everyone together. TMS will provide training, guidance and any assistance you need, please contact firstname.lastname@example.org Upcoming local and regional support group meeting dates are listed here: https://tmsforacure.org/resources/support-group-meeting/
National Biennial TMS Patient/Caregiver Conference: In odd-numbered years a large three-day Biennial National Patient/Caregiver Conference (approx. 200 attendees) is held in different areas of the country each time. For 2021, our conference will be held virutally due to the COVID-19 pandemic. This is a wonderful place to meet other patients, share your journey, and its very exciting to listen to (and meet!) expert physicians speaking about mast cell diseases, new research and treatments, etc with Q&A time. Information about next conference will be found here: https://tmsforacure.org/tms-conference/. Hope you can join!
Private peer-to-peer support (non-medical) and sharing is available on Facebook, you can visit “The Mast Cell Disease Society, Inc.” https://www.facebook.com/groups/155824303735/
Public TMS news is provided at “The Mast Cell Disease Society Inc News” https://www.facebook.com/The-Mastocytosis-Society-Inc-News-934144373407985/
Other online communities: https://tmsforacure.org/resources/online-support-communities/
We hope to meet you soon! For general questions about support groups or interest in starting/assisting one in your area, please reach out to: email@example.com
Jan Marie Smith
Sara Gemmill, RN
Minnesota / North Central States
Brenda & Patrick Hukriede / Becky Kihlmire
Heather Largent / Gloria Walker
Emily Bolden / Sharon Renfroe
Pediatric meetings: Kelly & Anthony Bennett
Oregon / Washington/Pacific NW
Oregon & Washington (Pacific NW area)
Shelly Faris /Anna Longo
Tennessee / Southeast States
Kristy & Balwinder
(See Oregon/Washington/Pacific NW post)
This website hosts countries from around the world, in their own languages, containing resources available there and supporting the annual International Awareness Day on October 20 each year: www.mastocytosis-mcas.org
TMS also collaborates with these sister organizations around the world whenever possible:
David & Heather Mayne
Lisa Morrison Thuler
Mastocitose Brasil: firstname.lastname@example.org
Shawna Lechner-Rumpel, President
www.mastozytose.com (After the tragic death of the founder, Ms. Andrea König in June 2017 both the association itself and the members Forum on the homepage “Mastozytose.com” were dissolved. The website is still available, but since the dissolution of the association there has been no new information added to it.)
https://mastozytose-info.de/ (This is the new website)
Dawn Brogden, Co-Chair
Jess Hobart, Co-Chair