Local TSSUS Groups
We believe it's as important for you to connect with others in the TS community as it is for you to understand the health care needs. We support and encourage our members to in their local to become TS resource group leaders in their community. Leaders are dedicated and passionate about creating awareness and providing events to meet the communities needs.
We currently have local groups in the following states/regions.
Frequently Asked Questions
What is a Resource Group?
A Resource Group is a volunteer-led group that offers Turner syndrome (TS) resources and support to those touched by TS, within a specific geographical location. The goal of a resource group is to connect people who are experiencing similar situations.
Participants of TS resource groups come together to share their stories, connect with others, and form lasting friendships. Resource groups may offer local community resources such as references to local physicians familiar with TS, opportunities to build the TS community, and connections with those who have similar life experiences. Group leaders may organize educational opportunities that offer valuable information on TS related topics, coordinated by professionals or guest speakers. A resource group is a source of encouragement and connection with those just like you.
Please Note:A resource group should never be used as a replacement for your standard medical care.
Who are Resource Groups for?
Resource groups can be established by anyone within the TS community – You may be a parent, woman with TS, family member, or friend.
Who Can Lead a Resource Group?
Resource groups can be led by anyone within the TS community. This includes: a professional, woman with TS, or other family members or friend.
When Do Resource Groups Meet?
Resource group meetings vary depending on the group leader and group member availability. TSSUS can connect you with local resource groups, which are located throughout the U.S.
In some areas, we have individual volunteers that host independent events such as meet and greets, or other gatherings. These volunteers are available to share information and support as well. If you would like to host an individual event, please contact Deborah Rios at firstname.lastname@example.org.
What type of activities do Resource Groups provide?
Some groups focus on social and support events, while other groups may hold fundraising and awareness opportunities such as Chasing Butterflies walks. You can participate in any of the events held by your local group.
How do I start a Resource Group?
If there is no existing local resource group in your area, we encourage you to start your own. TSSUS would love to help! We offer several resources to help you get started such as meeting outlines, leadership training on how to serve as an effective group leader, ideas on how & where to host a meeting, and help promoting your meetings to your local community and state. In addition, we assist our resource group leaders by publishing their contact info (e-mail only unless otherwise requested ) and meeting details in our Resource Group directory www.turnersyndrome.org/local-groups.
What are the requirements for a Resource Group Leader?
1. Agree to share the TSSUS mission and vision, as well as represent and promote TSSUS in your local community
2. Be a current paid member of TSSUS
3. Initiate and host 3 successful meet & greets (in person meetings) to determine local interest
4. Commit to a one year term and fulfill the duties as outlined within the local resource group handbook.
If you would like more information on starting a resource group in your area, please contact:
TSSUS Member Services Director