Belleville, Illinois — July 29, 2020 —Patients and families affected by rare diseases are gravely concerned about COVID-19 and its impact on their health and financial well-being, according to the National Organization for Rare Disorders (NORD) and Allsup, the nation’s premier disability representation organization. The long-term effects of the coronavirus are continuing to be studied, and those with the most severe and rarest of medical illnesses have significant cause for concern, according to NORD, which is joined by Allsup in raising awareness.
NORD’s recent COVID-19 Community Survey Report reveals important insights about this disease and signals the need for ongoing information-gathering and sharing for all individuals with severe disabilities who are concerned about possible worsening health due to COVID-19.
“It’s more important than ever that we raise awareness about the significant challenges caused by COVID-19 for the millions of people already living with an underlying condition and their families,” said Peter L. Saltonstall, President and CEO of NORD. The advocacy group focuses on the identification, treatment and cure of more than 7,000 rare diseases.
Allsup joins with NORD in raising concerns for those with rare diseases. “In more than 35 years helping people with disabilities navigate the complex SSDI application and appeals process, our experts have a deep understanding of the toll rare diseases take on patients and families,” said Dan Contreras, Allsup lead SSDI advocate. “And now COVID-19 has added yet another level of anxiety for those who are already suffering.”
NORD’s findings from a survey of 772 respondents include:
- 98% are worried about COVID-19; of those, 67% are very or extremely worried.
- 95% of respondents have been impacted at a cost to their immediate and long-term health and well-being because of the coronavirus.
- 74% have had a medical appointment canceled; of those, 65% were offered an alternative appointment via telephone or video.
- 69% of respondents are concerned about medication and medical supply shortages.
NORD’s report reveals the broad impact the coronavirus pandemic is having on this community of over 25 million, more than half of whom are children. Find the report at: https://rarediseases.org/covid-19-community-survey-report/
Allsup, the nation’s premier disability representation company, has helped hundreds of thousands of people nationwide, including those with incurable rare diseases, qualify for and receive Social Security Disability Insurance (SSDI) benefits. Learn more about applying for SSDI with a severe disability at FlieSSDI.Allsup.com.
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. Learn more at rarediseases.org.