Learning from the Pandemic to Improve Care for Vulnerable Communities: The Perspectives and Recommendations from the Rare Disease Community

The COVID-19 pandemic has brought about health and social care disruptions for millions of people with complex health needs and disabilities, who are amongst the most vulnerable populations. More than ever before, the need for integrated care is pressing, as fragmented health and care systems struggle to face the pandemic and vulnerable individuals are exposed to aggravated health, social and economic hurdles. The implementation of effective integrated care pathways is long due and must build upon the key guidelines being published by experts worldwide. Furthermore, the pandemic is opening the doors for more remote healthcare and care coordination, with both services and care receivers being increasingly more receptive to virtual and digital solutions, so long as they are fit for purpose and do improve care. In this article we will go over the impact that the pandemic has had so far for the community of people living with a rare disease, and how it has aggravated their already vulnerable condition. We will also recall crucial recommendations to achieve integrated care for those with complex needs and will bring to light the most recent perspectives of the rare disease community in regards to remote care. While we are still facing the COVID-19 crisis, we do hope that by 2030 we will look back at this pandemic as the ultimate propeller which led millions of people with vulnerable conditions to finally be supported by effective integrated and holistic care pathways.