Support and Additional Resources for Families Affected by PANS/PANDAS

At Pandas Awareness Texas, we understand the challenges that come with caring for children affected by Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS). Access to support, information, and expert care is essential to navigating the complexities of these conditions. Below is a list of trusted organizations and resources that provide guidance, advocacy, and support for families and medical professionals alike.

1. PANS Advisory Council (PANSAC) - Texas

The PANS Advisory Council (PANSAC) in Texas is dedicated to raising awareness, providing educational resources, and advocating for policy changes related to PANS and PANDAS. PANSAC brings together experts, families, and support networks to improve diagnosis and treatment for children in Texas who are affected by these disorders.
Visit PANSAC (Texas)

2. PANDAS Physician Network (PPN)

The Pandas Physician Network (PPN) is a nonprofit organization that works to connect healthcare professionals with the latest research, clinical guidelines, and treatment protocols for PANDAS and PANS. PPN also provides a network for parents to find qualified doctors who specialize in these conditions.
Visit PPN

3. ASPIRE (Association for the Support of PANS and Immune-related Encephalopathy)

ASPIRE offers a comprehensive range of services, from patient education and support groups to clinical resources and community advocacy. They are committed to improving the quality of life for children suffering from PANS/PANDAS by supporting families through every step of the treatment journey.
Visit ASPIRE

4. PANDAS Network

The PANDAS Network is a national nonprofit organization that provides information, support, and resources to families dealing with PANDAS and PANS. Their website includes helpful guides, family stories, and a directory of PANDAS-aware physicians and clinics.
Visit PANDAS Network

Additional Resources:

  • PANS/PANDAS Online Support Groups: Connect with other families and caregivers through online communities. These groups offer a safe space to share experiences, ask questions, and find encouragement.

  • Local Support Groups: Search for in-person or virtual support groups in your area on Facebook or other social media networks. Many regional groups are available to offer direct help and networking opportunities for families dealing with PANS/PANDAS.

  • The Celiac Disease Foundation provides information about the connection between autoimmune conditions like Celiac Disease and PANDAS/PANS. They offer resources for families navigating the complexities of these diseases and discuss the role of diet and other treatments.
    Visit Celiac Disease Foundation

  • The Ehlers-Danlos Society provides information about EDS and related connective tissue disorders. The organization offers educational resources, support networks, research and advocacy, working to raise awareness about the potential overlap between EDS and other chronic conditions, including autoimmune disorders like PANS/PANDAS.
    Visit Ehlers-Danlos Society

At Pandas Awareness Texas, we are committed to providing ongoing support to families and promoting greater understanding of PANS/PANDAS. We encourage you to explore these organizations for valuable resources, expert advice, and connections that can help you and your child on your journey.

For more information, or if you need assistance finding additional resources, please don't hesitate to contact us at pandasawarenesstx@gmail.com.