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COVID-19. The impact on young people in the rare disease patient community

Updated: Dec 4, 2020

Minah Khan is a 12th grade student at Chantilly High School located in Chantilly, Virginia, United States. Minah spent her summer interning under the direction of Shazia Ahmad, director at UBC, patient & physician services. As part of Minah’s internship, she spent some time researching the impact of the pandemic across the rare disease youth community

With the rapid spread of Coronavirus Disease 2019 (COVID-19) across the globe, the United States is facing a large pandemic, the likes of which have never been dealt with before. Rising cases, as well as deaths, have caused nations globally to make heavy decisions concerning health precautions, including travel restrictions, school shutdowns, and mandatory social distancing through the use of masks.

This pandemic has altered many aspects of life

However, it has had significant impacts on the rare disease community, specifically amongst the youth.

Before the pandemic, there was considerable progress in research towards supporting them.

Recently, however, many problems have presented themselves for the rare disease youth. Research and fundraising has been halted for many rare disease patients due to the focus on COVID-19. The health threat to patients has increased as well, and limited access to care has become a burden on both the patient and the caregiver.

Research and clinical trials for rare disease patients have been significantly reduced in the face of COVID-19. . In some cases trials already in progress had been affected by the pandemic, as patients were unable to visit labs or receive necessary treatment. In addition, fundraising for rare diseases has also been halted.

With the lack of resources for the rare disease youth community, many have taken to social media to express their concerns and connect with advocacy groups.

As a result, many online resources, such as webinars, were created by patient advocacy groups, including The National Organization for Rare Disorders (NORD). Some examples of resources especially helpful to youngsters in the rare disease patient community include;

  • NORD’s website - - Contains many resources and FAQs for patients and families

  • Caregiver Action Network - - Provides information on rare diseases and financial resources. It is also translated into several languages, including Spanish, French and German

  • Special Needs Alliance - -Has a newsletter and posts articles on relevant information concerning disability planning and COVID-19

The health threat that COVID-19 presents to youth people affected by rare disease has burdened both themselves and their caregivers. There is an especially higher risk for youth with rare diseases, as they are already predisposed to health issues. This has also made them less willing to visit high-risk areas such as doctors’ offices or labs. Furthermore, many health professionals have turned towards telemedicine to see patients.

As a consequence, patients have had rehabilitation and other important appointments cancelled. However, this has also raised many challenges for caregivers, as they now feel more responsible for their loved ones health. They have to provide home-schooling and in-home therapy themselves, and even this may not feel like enough for their child. In fact, many have seen their child's or adolescence condition worsen.

Though the problems for the rare disease youth community may seem out of our control, there are ways to ease the situation. It is important to speak out and communicate with those that can help, if you do have concerns.

Social media is a tool that many patients and advocacy groups use to convey their concerns to each other, and to others. According to the NIH (2020), a survey was recently launched to “gauge the impact” of the pandemic on the rare disease community, including the youth. This survey was created in light of concerns of patients, families, and patient advocacy groups, and it shows that more progress can be made for the rare disease community as long as they are clearly laying out concerns to those who can help.

Written by Minah Khan



NIH-supported research survey to examine impact of COVID-19 on rare diseases community.

(2020, May 7). National Institutes of Health: News and Events, p. NA. Retrieved from

Triantafyllidi, I., Boretti, S. & Goretti, J. (2020). The Impact of COVID-19 on Rare Diseases.

Kantar. Retrieved August 26, 2020.



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