Worldwide, “Rare Disease Day” is observed on the last day of February. The theme for 2019 is “Bridging Health and Social Care.” It seeks to raise awareness for rare, unknown or overlooked diseases and improve access to treatment. The European Organisation for Rare Diseases first established this day in 2008 to raise awareness for rare diseases and stress the need for social networks to support individuals and their families. Rare Disease Day rapidly became global as many patient advocacy organizations in US as well as Asia, Australia and Latin America joined hands to coordinate activities and promote the Day.
The Max Foundation and its Support Group Arm in India, Friends of Max, has for more than a decade managed and supported over 16000 patients suffering from CML and GIST – both rare diseases requiring life-long care. It has seamlessly guided patients and caregivers to the finest oncologists in India and under expert guidance, intervened successfully in areas of disease management, sharing of information, encouraged strict compliance, regular monitoring and afforded psychological counselling and emotional support, wherever necessary, for the patients and their families.
In observing a day as significant as Rare Disease Day, The Max Foundation and Friends of Max reaffirms its commitment to thousands of patients in India and many advocacy organisations the world over.
#RareDiseaseDay #ShowYourRare #VijiVenkatesh #TheMaxFoundation