The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S.
Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to support critical, non-medical needs. The program is designed to help rare disease patients and their families who may be facing monetary hardships due to the outbreak.
“Providing financial assistance to help meet the unique needs of the rare disease community has been central to our mission for over 37 years,” said Jill Pollander, NORD’s director of patient services, in a press release. “The NORD COVID-19 Critical Relief Program enables us to provide desperately needed support to rare disease community members whose lives have been directly impacted by the current pandemic.”
The funds are exclusively for living expenses such as utility bills, cellular or internet service, car repairs, and rent and mortgage.
Individuals must be U.S. citizens, have permanent residency status in the country, or be a U.S. resident for at least six months, Laura Mullen, NORD’s associate director of communications and public relations, told BioNews Services — the parent company of this website — in an email statement. Applicants must be willing to provide proof of residency, such as a utility bill in their name.
Applicants must have income at or below four times the federal poverty level, or be experiencing financial difficulties due to the pandemic. Examples of such difficulties include job loss, inability to work due to local stay-at-home orders, and school closures.
The program will provide funds for this year, and then will be reassessed annually, Mullen said. Donations to broaden those receiving help are being accepted.
For further questions about eligibility and how to apply, call NORD at 203-242-0497, or send an email to [email protected]. More information is also available on the NORD website.
The program is funded by corporate sponsors that include Genentech, as well as by grants and individual donations.
In general, rare disease patients with COVID-19 are at higher risk of serious illness. COVID-19 is a highly infectious disease caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). The World Health Organization characterized the outbreak as a pandemic on March 11.
A nonprofit, NORD supports people with rare diseases through advocacy, research funding, education, and networking with service providers. Since 1987, the organization has provided assistance programs to help patients with medications, insurance premiums, respite care, and travel to clinical trials or specialist consultations.
For information and links relevant to the rare community during the pandemic, please visit NORD’s COVID-19 Resource Center.