TSSUS support groups could be easily called Friend Groups because it’s important to connect with people that really “get you”. Who else knows how you feel when you must take vacation time for doctors’ appointments, or how proud you are of yourself for not getting lost on vacation? Who can help you overcome your fears about giving a growth hormone injection? Your friends at TSSUS ... that’s who can help you, encourage you and listen to you!
Group leaders organize events for socializing and sharing experiences. Anyone with a TS affiliation can attend but some events may be organized for only certain groups, such as women with TS. Groups may meet in-person or online-only.You’ll find them l listed as "online" instead of a state.
All TSSUS events are listed on the online Calendar of Events.
Contact us if you are interested in connecting with a group leader, starting a group, hosting a TSSUS one-time event, or have questions about events. Call 800-365-9944 or email firstname.lastname@example.org.
We are the Alabama Support Group for the Turner Syndrome Society. Our focus is to provide basic support and resources to all those affected by Turner Syndrome. As a group, we want to raise awareness of Turner syndrome and fundraise for the Turner Syndrome Society. All are welcome! We meet twice a year at various locations throughout the state (event locations vary based on the type of event). We would love for you to join us. Please let us know how we can serve you!
Lisa & Kelly Jasper
We are the Arizona Support Group for the Turner Syndrome Society. Our focus is to provide basic support and resources to all those affected by Turner Syndrome. As a group, we want to raise awareness of Turner syndrome and fundraise for the Turner Syndrome Society. All are welcome! We meet several times throughout the year at various locations throughout the state (event locations vary based on the type of event). We would love for you to join us. Please let us know how we can serve you!
We are the Central and Northern California Turner Syndrome Support Group, and are an affiliated resource group of the Turner Syndrome Society of the United States. Our focus is to provide basic support to all of the girls, women, and their families who have been touched by Turner Syndrome. We are widely known for our TS Patient Family Education Days, which are held at various major children’s hospitals through Central and Northern California. We usually have approximately 60 to 70 girls, women, and their families in attendance. We also meet at various restaurants throughout the SF Bay Area and Sacramento. We have also held annual TS Awareness Walks for the past three years at our State Capitol Building in Sacramento. Please contact our group leader to let us know how we can serve you.
Welcome to the Delaware Valley Turner Syndrome Support Group. Our desire is to provide support and resources to families and friends in the Delaware, Pennsylvania, Maryland area who are touched by TS. We enjoy getting together for activities or sharing a meal about 4 times a year. We plan a fundraiser every year or so to raise awareness in the area as well as funds for further research. Please feel free to come be a part of us as well as invite others to join us.
We are the Minnesota Support Group of the Turner syndrome Society. Our mission is to reach out and support all girls and women in MN affected by Turner syndrome even though we are based in the Twin Cities area. We have educational and social gatherings throughout the year. Most often we meet at local libraries. We try to gear our meetings and events to meet the needs of both families with younger girls with T.S. and adult women with Turner Syndrome.( We've been around since 1983) We often have funds available to assist members in attending national TSSUS conferences. We would love for you to join us!
This is the Turner Syndrome Society Support Group of Philadelphia and Southern New Jersey meets several times a year locally to offer support, network, enjoy social and artistic events, and fund raise for all affected by Turner Syndrome. Examples include Brunch at Fado in Philadelphia, Met Live in HD in Somerdale, NJ, and Uno Dough Raiser Days in Deptford NJ.
We are the Northeast Oklahoma Turner Syndrome Support group. Our mission is to provide support and education to those in our community that want to learn about TS or are directly affected by TS. We meet every 3 months at the Brookside Library, in Tulsa Oklahoma. All are welcome! We have our annual Chasing Butterflies Walk every October at Whiteside park to raise awareness of Turner syndrome and also raise funds for the Turner Syndrome Society. We also have a booth every February at the Tulsa Women's Living Expo to spread awareness.
Oregon Support group offers support to anyone who has been affected by Turner syndrome. We have meetings every other month, that are both educational and social. There are also opportunities to just get together when someone needs talk one-on-one. It is our desire to get the word out to our local community about Turner syndrome. One of the activities that we participate in regularly is the Butterfly Clinic at the children's hospital in Portland, Oregon. We would love for you to be our guest at the next one!
We are the Turner Syndrome Local Support Group of PA! Our focus is to help educate, support, and network within the state of Pennsylvania about the medical condition of Turner Syndrome. We welcome everyone! We meet in various locations in the Harrisburg/Central PA area as well as on Bloomsburg University's campus throughout the year. Our biggest event is the Butterfly Walk, and that is always an exciting time! Please join us at our events!
What is a Support Group?
A Support 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 support group is to connect people who are experiencing similar situations.
Participants of TS support groups come together to share their stories, connect with others, and form lasting friendships. Support 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 support 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 Support Groups for?
Support groups are available to anyone within the TS community.
Who Can Lead a Support Group?
Support groups can be led by anyone within the TS community. This includes a professional, a person with TS, or a family member.
When Do Support Groups Meet?
Support group meetings vary depending on the group leader and group members' availability. TSSUS can connect you with local support groups, which are located throughout the U.S.
In some areas, we have individual volunteers that host independent events such as meet and greet 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 email@example.com.
What activities do Support Groups provide?
Some groups focus on social and support events, while other groups may hold fundraising and awareness opportunities such as Chasing Butterflies walks.
How do I start a TSSUS Support Group?
Contact Deborah Rios at firstname.lastname@example.org to discuss the opportunity to organize a group in your community. We offer resources to help you get started and promote your events to the local community and/or state.
What are the requirements for a Support Group Leader?
1. Agree to support 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 events to determine local interest
4. Commit to a one-year term as a local leader and fulfill the duties as outlined within the local support group handbook.