From the the 8th to the 13th of July 2017, The International Society on Thrombosis and Hemostasis (ISTH) Congress will meet with the aim of advancing the “understanding, prevention, diagnosis and treatment of thrombotic and bleeding disorders”. At this time, phamax, a Swiss healthcare research organization dedicated to market access solutions, will be joining the congress and presenting its new initiative: RBDNow.
What is RBDNow?
RBDNow (Rare Bleeding Disorders Now) is a new scientific communication and cooperation platform, created specifically to improve the quality of life for those who suffer from rare bleeding disorders. It provides a space for the development of structured, scientific initiatives in RBD that will be designed in consensus with all the stakeholders.
phamax is striving to create a mechanism for sharing relevant data and best practices with the right stakeholders. The goal is to facilitate informed decision-making for better access to care for patients and more structured scientific initiatives. phamax’s overall mission is to improve patient access to the right care in a safe, timely manner.
“Based on our experience in other therapeutic areas, we believe that we can help to make a difference in RBD. We aim to bring all stakeholders together to address existing gaps and to share best practices between the developed and the developing countries.” – Behsad Zomorodi, CEO and founder of phamax.
Why is this a problem that needs addressing?
In order to create an action plan to fight a disease, healthcare policymakers and advocacy groups need to have consistent and structured patient data. There should be a structured pool of data on the regional levels which can be collected by relevant experts, which is then shared on national and global levels. There also needs to be established channels of communication between various stakeholder groups, including physicians, patients and policy-makers. This is important for developing efficient and unified treatment guidelines.
With regards to RBDs, there is a serious lack of data. The data often gets stuck at regional levels, meaning it is not organized and shared properly among the stakeholders. Though these issues do exist even in more developed countries, in the emerging markets, the situation is much more challenging.
The reason this represents such a problem is because RBDs form the largest group among the rare diseases and have a significant negative impact on the quality of life of patients.
phamax wants to draw attention to the issues involved with RBD research and data, while bringing together dedicated professionals to provide solutions and improve quality of life for countless people around the world.