BLUE RIBBON RARE DISEASE SYMPOSIUM-2018
Blue Ribbon rare disease symposium was organized by STRAND life science pvt Ltd. Every year they give a platform for the Patient Advocacy Group (PAG) to share their challenges, with the intent of being able to provide support where possible. PIDPWS participated in the event in March 2018. Kiran Majumdar Shaw, a well known personality in the field of pharmaceuticals, was also present along with Dr Banakar, Nodal Officer,State blood cell who was one of the guests at the event.
Dr Namitha Malur, who herself is a Thalassemic Patient has taken a great interest in all the rare diseases. she is also working with Strand Life Science Pvt Ltd and they have come up with a concept of OPFORD ie. OPEN PLATFORM for RARE DISEASES with a Vision to Create a world-class digital platform to connect rare disease patient communities, parents and caregivers to improve diagnosis, treatment and care of rare diseases and much more