ERN ReCONNET joins the light up initiative for the rare disease day (RDD 2024)

 In News

ERN ReCONNET joins the Light Up initiative for the Rare Disease Day 2024 by coloring Pisa and San Giovanni Rotondo (Foggia)

Starting 2008, the Rare Disease Day is celebrated all over the world the last day of February. Every year, the international rare disease community organizes initiatives, events to raise awareness among general society and politicians to share the impact of rare diseases on patients’ lives and, on their families, and caregivers.

Over 30 million people are living with about 7.000-8.000 distinct rare diseases (RD) in 48 countries in Europe. Each rare disease affects fewer than 1 in 2000 people, about 70% of rare diseases have a genetic origin, while the other 30%are non-genetic.

Unfortunately, many of them still have limited access to timely diagnosis and high-quality treatment. Moreover, the scientific evidence in RD may be scarce because of low numbers of patients and improving the evidence by pooling data in small populations can often be a challenge.
In 2017, in order to address these challenges the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across the European Union (EU) to tackle low prevalence and rare diseases that require highly specialized treatment and a concentration of knowledge and resources. The 900 highly-specialized healthcare units from over 300 hospitals in 26 EU countries that are part of the 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients’ care pathways and many other fundamental topics. The ERNs mission is making the knowledge travelling more than patients.

2024 is leap year and the RDD is observed today, 29th February, the rarest day of the year and for this special occasion, ERN ReCONNET will join the forces for the first time with the IRCCS Casa Sollievo della Sofferenza in San Giovanni Rotondo (Foggia) to light up the Pisa Tower and to decorate the IRCCS façade in green, pink, and blue!

ERN ReCONNET is happy to share with you the creation of this virtual bridge between Pisa and San Giovanni Rotondo (Foggia)  that connects two Italian centers of our Network.

We would like to thank the archbishop S.E. Giovanni Paolo Benotto and the Opera Primaziale for lighting up the Pisa Tower and the Fondazione Casa Sollievo della Sofferenza for the IRCSS façade decoration.

Happy Rare Disease Day!

Recent Posts