Support Groups

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.

To be automatically notified of upcoming meetings please sign up for FREE membership at https://tmsforacure.org/membership/

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 and anyone anywhere is welcome at any meeting. Upcoming local and regional support group meeting dates are listed here: https://tmsforacure.org/resources/support-group-meeting/

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 supportgroups@tmsforacure.org

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 virtually 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 Newshttps://www.facebook.com/The-Mastocytosis-Society-Inc-News-934144373407985/

Medical questions can be asked of TMS RNs in a private forum at TMS.Inspire.com or by email to nurses@tmsforacure.org

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: supportgroups@tmsforacure.org


Alabama

supportgroups@tmsforacure.org


Alaska

supportgroups@tmsforacure.org


Arizona

Susanne Bragg

AZsupport@tmsforacure.org


Arkansas

supportgroups@tmsforacure.org


California

Northern California

Cay O.

northerncaliforniasupport@tmsforacure.org

San Francisco

Cay O.

sfbaysupport@tmsforacure.org

Southern California

Davita G.

southerncaliforniasupport@tmsforacure.org

_______________________________________________________________________________

Colorado

Jan Marie Smith

coloradosupport@tmsforacure.org


Connecticut

Sara Gemmill, RN

CTsupport@tmsforacure.org


Delaware

supportgroups@tmsforacure.org


Florida

Michele Kress

floridasupport@tmsforacure.org


Georgia

Emily Bolden

georgiasupport@tmsforacure.org


Hawaii

supportgroups@tmsforacure.org


Idaho

supportgroups@tmsforacure.org


Illinois

Chicago  

Jeannie Dunn

chicagosupport@tmsforacure.org


Indiana

Pam Hodge

indianasupport@tmsforacure.org


Iowa

supportgroups@tmsforacure.org


Kansas

supportgroups@tmsforacure.org


Kentucky

supportgroups@tmsforacure.org


Louisiana

supportgroups@tmsforacure.org


Maine

Valerie Slee

Gail Barbera

secretary@tmsforacure.org


Maryland

supportgroups@tmsforacure.org


Massachusetts

Valerie Slee

Gail Barbera

secretary@tmsforacure.org


Michigan

Melanie W.

michigansupport@tmsforacure.org


Minnesota / North Central States

Kristine Greer

minnesotasupport@tmsforacure.org


Missouri

Kansas City

Brenda & Patrick Hukriede / Becky Kihlmire

kcMOsupport@tmsforacure.org

Springfield/Branson area

Heather Largent / Gloria Walker

SpringfieldBransonMOsupport@tmsforacure.org

St. Louis

stlouisMOsupport@tmsforacure.org


Montana

supportgroups@tmsforacure.org


Nebraska

supportgroups@tmsforacure.org


Nevada

supportgroups@tmsforacure.org


New Hampshire

Valerie Slee

Gail Barbera

secretary@tmsforacure.org


New Jersey

supportgroups@tmsforacure.org


New Mexico

supportgroups@tmsforacure.org


New York

Jan Hempstead

UpstateNYsupport@tmsforacure.org

Courtney Rabb

TristateNYsupport@tmsforacure.org


North Carolina

Emily Bolden / Sharon Renfroe

northcarolinasupport@tmsforacure.org

Pediatric meetings: Kelly & Anthony Bennett

NCPediatricSupport@tmsforacure.org


North Dakota

supportgroups@tmsforacure.org


Northeast

Valerie Slee

Gail Barbera

secretary@tmsforacure.org


Ohio

supportgroups@tmsforacure.org


Oklahoma

supportgroups@tmsforacure.org


Oregon / Washington/Pacific NW

Oregon & Washington (Pacific NW area)

Jeremy Saxton

Oregonsupport@tmsforacure.org

pnwsupport@tmsforacure.org


Pennsylvania

Kathie Murphy

pennsylvaniasupport@tmsforacure.org

Pittsburgh Area

Shelly Faris /Anna Longo

PittsburghPASupport@tmsforacure.org


Rhode Island

Valerie Slee

Gail Barbera

secretary@tmsforacure.org


South Carolina

supportgroups@tmsforacure.org


South Dakota

supportgroups@tmsforacure.org


Tennessee / Southeast States

supportgroups@tmforacure.org


Texas

Kristy & Balwinder

DallasTXsupport@tmsforacure.org

Celeste Finnerty

HoustonTXSupport@tmsforacure.org


Utah

supportgroups@tmsforacure.org


Vermont

Valerie Slee

Gail Barbera

secretary@tmsforacure.org


Virginia

supportgroups@tmsforacure.org


Washington DC

supportgroups@tmsforacure.org


Washington State

(See Oregon/Washington/Pacific NW post)

supportgroups@tmsforacure.org


West Virginia

supportgroups@tmsforacure.org


Wisconsin

supportgroups@tmsforacure.org


Wyoming

supportgroups@tmsforacure.org


***********************************************************************

International

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:


Australia

David & Heather Mayne

info@mastocytosis.com.au


Brazil

Lisa Morrison Thuler

Mastocitose Brasil: mastocitosebrasil@gmail.com


Canada

Shawna Lechner-Rumpel, President

shawna.lecher@sasktel.net

support@mastocytosis.ca

306.789.9800


Germany

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)

Contact:    kontakt@mastozytose-info.de

 


United Kingdom

Dawn Brogden, Co-Chair

dawn@ukmasto.org

Jess Hobart, Co-Chair

jess@ukmasto.org

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Emergency Room Guide

DOWNLOAD PDF >