Find Support

Find Support

Resources for every need

Support for individuals and families

The Tatton Brown Rahman Syndrome Community
The Tatton Brown Rahman Syndrome Community is here to help! Whether you have questions about TBRS, want to participate in research, or simply wish to share your story with a supportive group of others, we are here for you. We are a volunteer-run organization primarily composed of family members of individuals with TBRS.

Contact us with any questions!

Social media
The TBRS Community has established two Facebook groups: one is a private group for family, friends, caregivers, and individuals diagnosed with TBRS, while the other is a public page. The private page is a vibrant discussion forum as well as a great resource to find news, events, volunteer opportunities, and families and clinicians near you.

We also have a Twitter feed, @TBRSCommunity, where you can follow us for the latest in rare disease research, policy, fundraising opportunities, and more.

Our YouTube channel has wonderful videos for families, doctors, researchers, and anyone else interested in TBRS. Meet individuals with TBRS and watch the presentations from our Collaborative Research Network Conference that was held in November 2020.

Annual conference
The TBRS Community hosts an annual conference to connect with one another and to hear from experts in the field, including Dr. Kate Tatton-Brown. These events have been in person in the past, however due to COVID restrictions we held a virtual conference in 2021. Click here to learn about our upcoming conference.

Download materials
Our two-page fact sheet on TBRS and our pamphlet that includes individual profiles provide the most essential information on the syndrome and are helpful to share with doctors, teachers, care givers, and anyone interested in learning about TBRS.

Services and financial aid

Early intervention
States in the US offer services such as physical, occupational, and speech therapy to children under the age of 3 who qualify. These are free or discounted services. Families can reach out directly to their state’s early intervention program for an evaluation. The Centers for Disease Control and Prevention has a list of contacts and more information here.

School-age services
After children age out of early intervention, your local school district typically takes over the evaluation and delivery of therapies for kids with special needs. Call your school district to inquire.

These interventions are often geared toward meeting the needs of the child in the school setting, and therefore it may be advantageous to seek external therapies to round out their supports for at home or elsewhere. Some private insurance will cover physical, speech, occupational, and other therapies, but there may be limits, co-pays, deductibles, and other fees to consider.

Within the UK, an assessment for an Education, Health and Care Plan (EHCP) can be requested from the local authority. EHC plans outline the additional needs of a child and the appropriate support required to support these needs.

Adult services
As people with TBRS transition from school age to adult services, they may require continued supports. Programs vary from state to state and may be individualized to a person’s unique needs. Supports can include employment training, financial assistance, health insurance, continued adult education, community habilitation, day program, residential services, etc. There are some wonderful resources available. The IEP team at your local school district is a good resource during this transition.

You can also find helpful resources that support adults with a variety of needs from the US government and the Center for Parent Information & Resources. Medicaid The United States offers Medicaid Waiver Programs that offer adults and children with disabilities a variety of home and community-based services (HCBS), including health insurance. These services are delivered in an individualized and person-centered manner. It is helpful to apply for HCBS Waiver in childhood if you suspect your child may have long-term needs, however, you can also apply in adulthood. States offer different services, so please follow the links below to find out more about what is offered where you live, and how to apply.

Medicaid Home & Community-Based Services
Disability resources by state

National advocacy

The National Organization for Rare Disorders (NORD) is an advocacy group that has collected an extensive list of resources to access financial assistance and free or reduced healthcare. NORD itself also has a caregiver respite program, which provides up to $500 annually to help those who care for adults and children with a rare disease.

The Genetic and Rare Diseases Information Center is part of the US National Institutes of Health. It has compiled a list of assistance programs to help defray the costs of medical care. GARD can also help people find medical specialists.

The Child Growth Foundation
The Child Growth Foundation (CGF) is a leading UK charity focusing on the support and management of rare growth conditions affecting children and adults.