NORD has received thousands of phone calls and emails each week from concerned rare disease patients. They are asked for advice and how to decipher the myriad of contradictory information circulating on the web about the current pandemic. It’s a scary time for rare disease patients, as everyone is facing an unknown. However, there could be unforeseen benefits. The organization explains that as this pandemic forces researchers to re-evaluate how they design clinical trials, virtual designs may provide some patients an opportunity to participate who wouldn’t before have been able to enroll.

To better understand patient needs and challenges during this time, NORD conducted a survey.

A Survey

NORD’s recent survey examined what challenges rare patients and their caregivers are facing during this pandemic. Of the respondents, 772 people were patients themselves.

• 98% of all participants said they were worried about being diagnosed with COVID-19 personally
  • 67% were extremely worried
• 95% of participants say the pandemic has affected their lives
• 60% are fearful about medication shortage and the shortage of necessary medical supplies
• 39% have had issues accessing medical care
• 74% have faced canceled appointments
• 59% have been able to have appointments virtually
• 29% have lost their employment
• 40% have had a loss of income in their household
• 11% of those who have lost their jobs have also lost their health insurance

Non-Medical Assistance Fund

NORD established a new fund on April 15th which provides money for rare disease families in need during this time. These funds are specifically for non-medical expenses.

NORD evaluates each case and provides funds based on the criteria below and their own available funds. This eligibility can be determined within a 10 minute phone call.

• rare diagnosis
• need driven by the pandemic
• financial eligibility
• request is not within the criteria of medical programs, such as-
  • mortgage
  • utilities
  • emergency car/appliance/home repair
  • education support while schools are closed

Email NORD here for more information.

Legislative Action 

NORD has been working tirelessly by writing to Congress in order to remove some of the burdens rare disease patients are facing during this pandemic.

There are burdens in regard to –

• Obtaining prescriptions without having to step foot in a doctors office in person
• A shortage of necessary medication due to their study in COVID-19 (for instance, hydroxychloroquine which is used for lupus and rheumatoid arthritis (RA) treatment)
• Insurance limits on medication refills which is impacting patients’ ability to receive treatment at home and not in a hospital during the pandemic
• Restrictions on telemedicine licensing which also increases the amount rare patients with compromised immune systems are forced to travel to see their doctor in person

Testing, Treatments, & Vaccines Webinar

Much of the above information has been discussed in NORD’s webinar series. The next will occur on May 5th.

At 2pm EST on the 5th NORD will host a webinar featuring Rishi Desai which discusses testing, treatments, and vaccines for COVID-19.

You can read more about NORD’s efforts during COVID-19 here.