Global Genes provides hope for the more than 400 million people affected by rare disease around the globe. We fulfill our mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on their own behalf.
The Rare Anaemias International Network (RAIN) is a global community-based organisation of patient advocacy groups, healthcare professionals, and industry partners which aims to advocate for the rights of people living with rare and ultra-rare anaemias. RAIN will work to raise awareness through education and collaboration to enable timely diagnosis, access to basic treatment and advanced therapies, development of specific healthcare policies, and exchange best practices that will improve the lives of people living with rare anaemias globally.
The Red Cell Revolution is a new advocacy advisory council, funded by Agios and designed to build connections within hemolytic anemia communities, including #PKdeficiency, #thalassemia and #sicklecelldisease. The organization aims to bring together patient and physician thought leaders to to raise awareness about the needs and experiences of people touched by these diseases, help inform Agios’ mission and contribute to shaping the broader hemolytic anemia field through evidence-based patient advocacy. We are thrilled to have launched this novel approach to drive change within these rare blood disorder communities.