While the COVID-19 pandemic is spreading through the world, we wish to send a message to the IRDiRC community and express our nearness and encouragement to you all.
The impact of COVID-19 outbreak on rare disease patients cannot be underestimated; not only their condition makes them frailer if infected, but also the exceptional burden hospitals are facing make access to the needed care all the more difficult for them. Research on rare diseases is delayed due to prioritization towards the pandemic, as well as due to work and social distancing restrictions.
On the positive note, we recognize that all of us in the IRDiRC family are engaged at one or more levels in response to the outbreak. Clinicians are on the frontline and are doing all they can to find alternative ways to support patients, including rare disease patients. At the same time, patient organizations continue to play an important role in providing community support and arranging for relevant resources for families. Funding organizations are considering how to take measures to alleviate consequences and ensure research can be sustained.
We would like to call on all stakeholders to maintain research on rare diseases, and be open to new directions the epidemic may offer in terms of scientific questions relevant to rare diseases. The pandemic has brought research at the forefront as the universally acknowledged method to fight the new virus. Sharing of biospecimens, clinical data and clinical translation in concert with regulators are taking place at full speed. Similarly, we are sure IRDiRC principles of collaboration, sharing and transparency will continue to guide us through these challenging times.
Let us stay strong, be creative and make the best use of the resources IRDiRC has contributed to building and sharing for the health of patients.
Patients living with rare diseases urgently need access to diagnosis and therapies for their conditions. No single country can face global health issues alone, be it a virus or rare diseases. May this pandemic reinforce our collaborative ties and principles, to ensure no person living with a rare disease is left behind.
Dr. Lucia Monaco, chair and Dr. David Pearce, vice-chair
IRDiRC Consortium Assembly