Prof. Giuseppe Remuzzi featured in OMAR (Osservatorio Malattie Rare)
(18 March, 2025) Rare diseases are a global challenge that requires a global response. These are the words that accompany the birth of the Lancet Commission on Rare Diseases, an international Commission on rare diseases born with the main objective of improving the lives of those affected. The only Italian expert among the 27 international members is Prof. Giuseppe Remuzzi, director of the Mario Negri Institute of Pharmacological Research. Read the full article.
How Lived Experience Powers Rare Disease Advocacy, by Danny Buckland, Re:Solve Global Health (27 February, 2025)
In cluttered and often under-resourced health systems, the needs of people living with rare diseases can be overshadowed by the demands of more prevalent conditions. Innovative collaborations are campaigning for global change and training medical students to be rare disease advocates. Read the full article.
The Hong Kong Genome Institute (HKGI) and Rare Diseases International (RDI) partner for the first time to organise the Second In-person Meeting of the RDI-Lancet Commission on Rare Diseases (LCRD)
(Hong Kong, 19 February 2025) The Hong Kong Genome Institute (HKGI), Rare Diseases International (RDI), and The Lancet Commission on Rare Diseases (LCRD) will join forces for the first time to organise the International Genomic Medicine Symposium (Symposium) on 17 November 2025 (Monday) at the Hong Kong Science Park.
This landmark event will convene distinguished experts, clinicians and scientists from over 20 countries and regions to foster knowledge exchanges in genomic medicine and rare diseases, representing a significant collaboration among leading institutions committed to accelerating the development of genomic medicine on a global scale and providing an unparalleled opportunity to improve outcomes for the 300 million persons living with a rare disease worldwide.
New RDI-Lancet Commission on Rare Diseases: Driving Global Impact
The RDI-Lancet Commission on Rare Diseases (RDI-LCRD) is a new initiative dedicated to improving the lives of Persons Living with a Rare Disease (PLWRD) worldwide. Led by Dr. Roberto Giugliani (Brazil) and Dr. Kym Boycott (Canada), the Commission brings together 27 experts from six continents to develop evidence-based recommendations that can be implemented globally.
Launching on the week marking both the start of the month of Rare Disease Day (February 28th) and the opening of the meeting of the World Health Organization (WHO) Executive Board (February 3rd-11th), comprised of 34 Member States, where the World Health Assembly (WHA) Resolution on Rare Diseases will be discussed, the RDI-LCRD aligns with the WHA Resolution on Rare Diseases, which urges the World Health Organization (WHO) to develop a 10-year Global Action Plan. This marks a historic opportunity to prioritize rare diseases in global health policy.