We are committed to helping LGS Families impacted by natural disasters get the assistance they need.
The following list contains links to resources and third-party websites that specialize in emergency disaster relief.
You can also email us at familysupport@lgsfoundation.org and we’ll do our best to help during this difficult time.
NORD – Hurricane & Natural Disaster Emergency Relief:
NORD’s Hurricane and Natural Disaster Emergency Relief Fund provides financial assistance to those who are diagnosed with a rare disease and are impacted by natural disasters. This program provides limited assistance to eligible individuals on a first-come, first-served basis as program funding allows. Covered expenses may include unexpected utility costs (such as those caused by severe weather), physician–prescribed medical devices and/or emergency repairs on medical devices (scooters, batteries, lifts for vehicles for wheelchairs or scooters, etc.), emergency automotive repairs, and temporary emergency lodging.
Eligibility: Rare diagnosis (this is not a disease-state specific program, it’s open to all rare diagnosed individuals)
Phone: 877-291-8082
Email: hurricane@rarediseases.org
NORD – RareCare® Patient Assistance Programs:
Phone: 1-800-999-6673
Website: rarediseases.org/patient-assistance-programs
Child Neurology Foundation – Family Support:
Phone: 859-551-4977
Website: www.childneurologyfoundation.org/family-support
Phone: 800-621-3362
Website: https://www.fema.gov/assistance/individual
American Red Cross – Disaster Relief & Recovery Services:
Phone:1-800-733-2767
Website: www.redcross.org/get-help/disaster-relief-and-recovery-services.html
State Specific Disaster Relief Resources:
Special Needs Shelters
Website: www.floridahealth.gov/newsroom/2024/10/20241007-special-needs-shelters-milton.pr.html
Special Needs Registry
Website: snr.flhealthresponse.com/?utm_medium=email&utm_source=govdelivery
County Emergency Management
Website: www.floridadisaster.org/counties/?utm_medium=email&utm_source=govdelivery
FEMA North Carolina Tropical Storm Helene
Website: www.fema.gov/disaster/4827
United Way of North Carolina
Phone: 1-888-892-1162
Website: nc211.org
State Individual Assistance Application
The North Carolina Individual Assistance program helps uninsured or underinsured families impacted by declared State and Federal disasters. If you have insurance, file your loss with your insurance company immediately.
Website: www.ncdps.gov/state-individual-assistance-application
Emergency Planning:
Emergency Kit Checklist for Families with Children and Youth with Special Healthcare Needs (CYSHCN)
If a child with special healthcare needs is part of your family it is very important to be prepared for an emergency in which you may have to stay inside for longer than usual or in the event the electricity goes out. An emergency kit is necessary for all families, and especially important for families of children with special healthcare needs.
An emergency kit has all of the things that you and your family may need during an emergency. In addition to the common items found on the emergency kit checklist for kids and families page, the checklist described here contains items that are specific for families of children and youth with special healthcare needs (CYSHCN). Each family’s kit will vary depending on the individual needs of their child. It is best to have all of these things collected before an emergency, stored in a container, and kept in a place that is safe and easy to get to in the event of an emergency. Making a family emergency kit can be fun for the family to do together. Here’s how to have a family emergency kit treasure hunt:
- You will need a large plastic bin or box to put things into.
- Answer the following questions to guide your treasure hunt.
- Check items off the list as you put them into your emergency kit box.
- Place an updated copy of your checklist inside your large plastic bin or box once your kit is put together to know what is inside the kit and to know where you can always find your checklist.
Listos California has free materials in many languages that you can use and share to promote disaster preparedness in your home and community.
Being prepared for emergencies is the best way to keep you and the individuals you support safe. This poster provides four actions to take to prepare yourself and the individuals you support for an emergency: inform, prepare, create, and practice.
If you need emergency help, please call 9-1-1.
Have a disaster relief resource that you’d like to share with us? Please email the information to info@lgsfoundation.org.
The above list contains links to third-party websites. The Lennox-Gastaut Syndrome (LGS) Foundation is not responsible for the content or privacy policies of these external sites. While we try to only list sites here that we feel contain useful information for our families, a listing here should not be construed as an endorsement for any products or services they may provide.
Updated 11/13/24 (KK)