There are over 300 million people living with one or more of over 6000 identified rare diseases around the world. 72% of rare diseases are genetic and 70% of those genetic rare diseases start in childhood.

Rare diseases are often chronic, progressive and degenerative and are characterised by a broad diversity of disorders and symptoms.

The scientific research on rare disease as well as the marketing of medicines for rare conditions are not convenient for pharmaceutical companies: in view of considerable investments in research and development, revenues are very low. Moreover, the lack of scientific knowledge and data on rare diseases often results in a delay in the scientific progress.

Nevertheless, the right to health shall be guaranteed to these patients who need equitable access to diagnosis, treatment, health and social care.

The fourteenth Rare Disease Day will be celebrated this year on 28 February and will the opportunity to advocate and raise awareness for rare diseases at local, national and international level.

In occasion of the Rare Disease Day 2021, Fondazione Gianni Benzi developed an informative material focused on rare diseases and COVID-19.  Rare disease patients are currently struggling with several difficulties related to the COVID-19 pandemic. Besides a higher risk of COVID-19 complications, these patients are facing issues in getting needed treatments including lifesaving care. Therefore, they claim to access to the COVID-19 vaccination.

However, data on the effect of the authorised COVID-19 vaccines on rare diseases patients are still not available. For this reason, a lot of doubts and questions remain about COVID-19 vaccines for these vulnerable populations. These patients need more detailed information!

Read and share our informative material to discover more and visit our website to consult the full list of the available guidelines and recommendations, published by the rare diseases scientific community and health authorities, related to the COVID-19 vaccination and specific rare conditions.

Do not hesitate to suggest any further resources by contacting us!