Find a Community Network

National NPH Meet-Up

Join us for an NPH Community Network get-together! We all need to see old friends, and new faces, and have some fun with a community that knows us in a way that only those living the NPH journey do. We welcome all those living with NPH throughout the USA!

When: 3rd Wednesday of the month

Contact: Gary

Email: dallasnphcommunity@hydroassoc.org

Teens Hang-Out

Come meet other teens with the condition! We'll hang-out, maybe play an icebreaker game, talk, and hopefully make some new friends. 

When: 1st Sunday of the month

Contact: Maya, Spencer, Bryon, & Aahna (Teens), Liz (CN Leader)

Email: info@hydroassoc.org

Middle School Crew Chat

Come meet other middle school tweens and teens with the condition! We'll hang-out, maybe play an icebreaker game, talk, and hopefully make some new friends. 

When: 2nd Sunday of the month

Contact: Katelyn and Camille (Middle Schoolers), Sierra Smith, HA Staff Co-Leaders

Email: info@hydroassoc.org

Breaking Barriers Men's Talk (Adults 19 and older)

This group is a safe place where men, ages 19 and older, can share their experiences, support one another, and enjoy the company of those men that understand the journey of living with hydrocephalus. 

When: 4th Wednesday of the month

Contact: Alex and Patrick, Peer Support Volunteers and Group Co-Leads

Email: mensgroup@hydroassoc.org

Young Adults in their 20s Meet-Up

Come hang out with us and meet other young adults in their 20s living with hydrocephalus. We will have fun intros, icebreakers, and conversation. Let’s get to know each other!

When: 2nd and 4th Saturday

Contact: Pedro, Sarah, Stacy, and MacKenzie 20s CN Co-Leaders

Email: info@hydroassoc.org

30ish–Living Life to the Fullest HANG-OUT

Join us for a chance to connect with others who share similar experiences. This group will be a place to learn, share, and support others ages 29–40 navigating the journey of hydrocephalus. We all need to see old friends, new faces, and have some fun with a community that knows us in a way that only those living the hydrocephalus journey do.

When: Every 3 Months on the 1st Saturday
Contact: Sara, Janay, and Caitlin, 30s CN Co-Leaders

Email: info@hydroassoc.org

Sharing the Journey Women's Group Age 40+!

Hydrocephalus is a complex and unpredictable condition that requires lifelong management. For women in particular, it can impact us emotionally, socially, physically, relationally, and professionally in combination with managing the day-to-day challenges of living with a chronic condition. Do you have questions about how hydrocephalus impacts you as you age? Join us for a chance to connect with other women who share similar experiences. This group will be a place to learn, share, and support other women, ages 40 and above, navigating the journey of hydrocephalus.

When: 3rd Saturday of the month

Contact: Patricia (Patty) and Kara, Group Co-Leaders

Email: info@hydroassoc.org

Our Shared Journey: Parent Support Group

From birth through high school, every stage of raising a kid with hydrocephalus brings new challenges—and you don’t have to face them alone! Join other parents and expert guest speakers to learn strategies for managing anxiety (yours and your kid’s), stress, social skills, navigating IEPs, and much more. Walk away with practical tips, fresh ideas, and the confidence to tackle what’s next.

When: 2nd Monday, Quarterly

Contact: Susan, Sarah, & Shelby, MD, IN, & TX Community Network Leaders

Email: info@hydroassoc.org

Supportive Families Embracing Disability Journeys

When: 3rd Thursday of the month

Contact: Jackie and Susan, PA Community Network Leader

Email: easternpacommunity@hydroassoc.org

Building Bonds- Parents of Young Adults

This parent-to-parent group is designed to provide a safe and welcoming space for parents with children ages 19- 29. We will gather together to share ideas, celebrate successes, and navigate the challenges of hydrocephalus in a supportive environment.

When: 3rd Tuesday, Quarterly

Contact: Tiffany, FL Community Network Leader

Email: southflcommunity@hydroassoc.org

L1CAM Family and Relatives Meet-Up

Finding our way with L1CAM! This group is designed to be a source of encouragement, support, and share helpful resources. Our space to learn more about the impacts of the L1CAM syndrome on families within our community.

When: 3rd Tuesday every 3 months

Contact: Alison

Email: info@hydroassoc.org

La asociación está aquí para apoyar a todos los afectados por la hidrocefalia, incluyendo nuestra comunidad que habla español! Unámonos para construir un círculo de apoyo para nuestras familias. 

When: 2do miércoles cada 3 meses

Contact: Maleni

Email: info@hydroassoc.org

Hydrocephalus and Chronic Pain Meet-Up

People living with hydrocephalus can experience specific types of chronic pain. This group will help you become familiar with the resources available to effectively manage your chronic pain symptoms. Join Dr. Maria Guglielmo as she facilitates engaging group discussions that will provide hope for individuals living with chronic pain.

When: 1st Saturday every 3 months

Contact: Dr. Maria Guglielmo

Email: info@hydroassoc.org

Yoga on the Brain

This support group is meant to be a space where yoga therapy practices are offered as a tool and platform for supporting personal symptoms of Hydrocephalus and neurological conditions. While yoga therapy interventions provided by the certified yoga therapist and hydro warrior are offered via an evidence-based and trauma informed lens, please consult your doctor and remember that Yoga Therapy is not a replacement for medicine or medical treatment.

When: 4th Thursday, Quarterly

Contact: Lian

Email: info@hydroassoc.org