Sometimes a helping hand is most needed when an unexpected emergency arises. NORD is committed to supporting rare disease patients and families and offers several programs to assist them in times of crisis.
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—including the severe weather and snowstorms that have impacted parts of the US most recently. 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.
Program Contact Information:
Email: hurricane@rarediseases.org
Phone: 877.291.8082
Fax: 203.486.8941
NORD also offers disease-specific Emergency Relief Programs for eligible individuals, providing support with unforeseen costs or expenses related to emergency situations or emergent need that cannot be afforded without limited, short-term assistance. Covered expenses may include utility costs, rent or mortgage payment/s, home maintenance/repair, appliance repair/replacement, emergency automotive repairs, cell phone expenses, and temporary emergency lodging. Support is available for eligible patients with a confirmed diagnosis in one of the following disease states:
- Alpha-1 Antitrypsin Deficiency
- Atypical Hemolytic Uremic Syndrome (aHUS)
- Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN)
- Chronic Granulomatous Disease (CGD)
- Cystinosis
- Hypophosphatasia (HPP)
- Morquio A (MPS IV)
- Mucopolysaccharidosis (MPS VI)
- Paroxysmal Nocturnal Hemoglobinuria (PNH)
- Phenylketonuria (PKU)
- Thyroid Eye Disease (TED)
- Urea Cycle Disorders (UCD)
Program Contact Information:
Phone: 203.616.4323
Visit RareCare® for additional disease-specific program information.