Additional Caregiver Resources

This is the LGS Foundation’s main online, private family support community and has over 8,000 members. Primary caregivers of loved ones with LGS may join this group and ask questions and seek support from other caregivers who are navigating the LGS journey. This group is only for LGS caregivers. Join the Caregiver Community here. ↗

The LGS Foundation co-hosts several private support groups with monthly opportunities to connect with other parents and caregivers of loved ones with Lennox-Gastaut Syndrome (LGS). These monthly support groups are only available to LGS caregivers who are members of the LGS Foundation’s Online Caregiver Support Community. 

Learn about upcoming support groups here. ↗

Caring for a loved one demands time, attention, patience, and dedication. Our Caregiver Respite Program provides assistance to enable caregivers to attend conferences and events, or simply have an afternoon or evening away. Apply today. ↗

ARCH does not provide respite care, but we may be able to help you find it in your local community through your State Respite Coalition or Lifespan Respite Program or through resources listed below, including State Provider Registries or the Eldercare Locator. Learn more here. ↗

A Mother's Rest is a network of non-profit, respite retreat inns created exclusively to serve mothers & other caregivers of loved ones with disabilities. AMR coordinates affordable, 3-night bed and breakfast respite retreats, providing caregivers with adequate time to decompress in an intimate, therapeutic environment. Learn more here. ↗

Raregivers™ is a global support network focused on emotional wellness for caregivers, patients, and professionals in rare, chronic, and complex disease communities. The organization currently supports more than 20,000 families across 33 countries.

Learn more about Raregivers™ and available resources. ↗

Raregivers™ has partnered with Crisis Text Line to provide free, confidential, 24/7 mental health support for caregivers and families in rare disease communities.

Text RARE to 741741 anytime to connect with a trained Crisis Counselor.

Because no caregiver should feel alone when support is needed most.

On Rare Disease Day, psychotherapist, author, and rare advocate, Rebecca Alexander, LCSW-R, MPH, RYT, hosted a webinar with NORD centered around gaining insight and tools to support your rare teen’s mental health while nurturing your own personal well-being. Click here to watch. ↗

Panelists from our 2023 Living Rare Forum shared the mental health toll of living with rare diseases. They explored ways to navigate life while coping with uncertainty, feel affirmed that our thoughts and feelings are valid and normal, and nourish yourself along the way. Watch this session here. ↗

CNF’s Roadmap to Resources brings organizations, programs, and services together in one free, downloadable guide ↗. Whether you’re learning about a diagnosis or looking for help with daily life, the guide offers resources you can return to from childhood through adulthood.

Inside the guide, you’ll find:

• Understanding Your Loved One’s Condition: Information about specific conditions, genetic testing, and clinical trials.
• Support & Connection: Mental and behavioral health resources, along with support for trauma and grief.
• Everyday Help: Resources for financial support and navigating insurance.
• Learning & Growth: Early intervention, education, and the transition from pediatric to adult care.

Yoga offers physical and mental health benefits for people of all ages. And, if you’re going through an illness, recovering from surgery or living with a chronic condition, yoga can become an integral part of your treatment and potentially hasten healing. Learn more here.  ↗