ICYMI: Financial Help Available for Rare Disease Patients Affected by the COVID-19 Pandemic

By Natalie Homan from In The Cloud Copy

The COVID-19 pandemic has changed the lives of millions around the world in an incredibly short span of time. It’s hard to say what the final health cost of the disease itself will be, but it’s even more difficult to estimate the social and economic fallout of social isolation, stay-at-home orders, and the worldwide sense of fear that’s become a new normal.

Uncertainty is the New Normal

The pandemic has made life different for everyone, but certain populations are experiencing much harsher and potentially long-term consequences, particularly in economic terms. For example, in the first four weeks after President Donald Trump declared the coronavirus a national emergency in the United States, 22 million people filed for unemployment assistance. This loss of jobs won’t be going away in the immediate future.

While losing a job is a major challenge for anyone, it’s especially devastating for those who suffer with expensive medical challenges, especially those who have rare diseases. In the United States, the loss of health insurance and the cost of medication, therapy, and doctor’s visits can rapidly ruin a person’s entire economic outlook. Furthermore, the physical challenges experienced by someone who suffers from a rare disease can make it much more difficult to find a new job in their field or switch fields like others may be able to do.

Assistance for Those Impacted

The U.S. government has attempted to alleviate a very small portion of the financial burden through the coronavirus stimulus package, which offered qualifying Americans a cash sum based on income and family size. Other organizations are doing their best to step in and help fill in some of the gaps that those in the rare disease community may feel.

One of the groups hoping to help those in the rare disease community who are suffering financially because of the coronavirus outbreak is NORD, the National Organization for Rare Disorders. For the last 37 years, NORD has worked on behalf of rare disease patients to seek out treatments, connect patients to each other, and to be a voice for everyone who experiences a rare disease.

COVID-19 Critical Relief Program

Now, NORD is offering up to $1,000 in financial assistance to qualifying Americans. Called the NORD COVID-19 Critical Relief Program, this program is intended to help with non-medical but necessary expenses like housing, utilities, vehicle repairs, and phone service. To qualify for the program, individuals must:

  • Have an applicable diagnosis.
  • Be a U.S. citizen, have permanent residency status in the country, or have been a U.S. resident for at least six months.
  • Provide proof of residency (such as a utility bill in their name).
  • Have income at or below four times the federal poverty level OR be facing financial hardship as a direct result of the pandemic and its associated restrictions.

NORD has always recognized that those with rare diseases may face stigma and misunderstandings that make it more difficult for them to get the help they need. This is especially dangerous in a time of crisis like the country is currently facing. If you or anyone else you know may qualify for this program, please  contact the program directors to ask for more details and apply. You can also make a donation to support this program on NORD’s official website.


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