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
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 10/08/24 (AM)