Why RBDNow?

Bleeding disorders are the largest among the numerous rare diseases, posing a challenge to the medical and patient community. Apart from the general issues like awareness, scarcity of published data, cost, and access to care affecting them, rare bleeding disorders also significantly impact the quality of life of patients and care givers. Also, suboptimal treatment/regimens and medications sometimes play into the hands of the natural course of the disease, causing frequent problems for clinicians. Efforts are underway to develop and provide coordinated and consistent data at regional levels to aid actions from policy makers and advocacy groups. However, since the data is still at regional levels, it is not always structured to answer the unmet needs. More so, these challenges are evident in the emerging economies. phamax intends to explore these unresolved issues in detail through structured scientific initiatives designed in consensus with the various stakeholders. We believe that this approach will aid in improved patient outcomes, and facilitate the design of future interventions by focusing on current issues, consensus of clinical leaders, and data harmonization.

What RBDNow does?

RBDNow initiatives:

  • Build a robust network of Haemophilia experts governed by an expert advisory board of key clinical leaders
  • The expert advisory board will meet periodically to identify and formulate both near and long-term activities, oversee their progress, and provide course correction advice based on unmet needs
  • The Haemophilia experts will generate relevant data on the issues, participate in activities to aid access and serve as advocates for patient causes in respective centers/countries
  • Evidence generated from the initiatives will be published in relevant scientific conferences or publications, both locally and globally
  • Design interventions in the emerging markets based on the best practices from established rare disease management systems
  • Engage patient advocacy groups, care givers, non-governmental organizations, policy groups and healthcare industry partners in the long run

Planned outputs from the bleeding disorders platform:

Get in touch with us to know more at info@phamax.ch

RBDNow is the trademark of phamax AG.