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Corporate, People, Genetic & Rare Diseases

Video: A Message of Hope for the Rare Disease Community

Love and care is never rare

A Message of Hope for the Rare Disease Community
May 14, 2020

COVID-19 is impacting the lives of everyone around the world. From stay at home orders to economic losses, families are being confronted with new challenges. While “social distancing” may not feel as new for patients and families in the rare disease community, the onset of the novel Coronavirus brings fear, struggle and additional challenges to families faced with a rare disease.

Illumina recognizes the added challenges and increased burden COVID-19 adds to the lives of the rare disease community. Our mission to help patients with rare disease by unlocking the power of the genome has not slowed down during this time, and our message to the rare disease community is still one of never-ending hope.

 

 

EURORDIS-Rare Diseases Europe, found that in Europe nine in 10 people living with a rare disease is experiencing an interruption in care because of COVID-19. Patients who usually receive care in hospitals are experiencing difficulties with the hospital or unit in which they typically receive care being closed.

In the United States, the National Organization for Rare Disorders (NORD®) released findings from a recent survey on the critical issues and concerns the rare disease community is facing due to the COVID-19 pandemic. With 95% of respondents noting they are impacted at a cost to their immediate and long-term health and wellbeing, the findings reflect a community directly affected and overwhelmingly concerned about the COVID-19 crisis.

While a fear of medical supplies and medications is a common thread for everyone around the globe, rare disease patients and families are also used to looking for the silver lining when it comes to their health. In the US, 65% of patients with cancelled medical appointments were offered alternative appointments via telephone or video – something the rare disease community has been pushing for.

One of the biggest challenges for Kawasaki Disease, a rare disease that is the leading cause of acquired heart disease in the United States, has always been misdiagnosis due to doctors and parents not knowing about this particular syndrome. With a developing relationship between Covid-19 and Kawasaki Disease being seen in children, the name of the illness is now achieving global recognition. While no one wants to see children get sick, recognizing the symptoms and a general knowledge of Kawasaki Disease, will help with future diagnosis, treatment and research options to learn more about what causes this disease.

Through the elevated fears, increased struggles and unexpected silver linings, one of the brightest silver linings of this time, is the amount of innovation in service to others. From individuals to communities, from companies to countries - we are finding ways to support each other and address the pandemic together. 

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