NBDF is delighted to dedicate this edition of HANDI Highlights* to the upcoming Rare Disease Day® (RDD), which is observed every year on February 28th (or 29th in leap years) all around the world.
According to rarediseaseday.org, RDD is a “globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Since its first launch creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.”
This HANDI Highlights includes educational booklets produced by NBDF, external articles, and video recordings of substantive presentations on topics related to rare factor deficiencies and inherited platelet disorders. Many of these resources speak to the challenges and lived experiences of individuals and families affected by rare bleeding disorders. Also included are resources for healthcare providers on the treatments available for these conditions as well as a scientific path forward for fostering more research on ultra-rare bleeding disorders.
Visit NBDF’s publications homepage to access a full list of resources.
Go to the HANDI homepage to learn more about our information service and read choice answers to frequently asked questions about hemophilia, von Willebrand disease, and other inherited bleeding disorders.
*HANDI Highlights is a monthly communication designed to connect the bleeding disorders community with practical and readily accessible resources. The December edition featured resources on new and emerging novel technologies for the treatment of people with bleeding disorders.
