Unforgettable Experience of Community Engagement and Education

I as a female sufferer (factor V) attended my first Global National Member Organization training and World Federation of Hemophilia’s World Congress held in Orlando- USA, which was the combined conferences of NHF and world congress in which largest gathering ever of people with bleeding disorders took place. It was an unforgettable experience of community engagement and education.

I got an opportunity to represent India in the Opening plenary session with NHF in Global NMO Training. My topic was Gender Equality in Bleeding Disorders Organizations; it was such a pride in representing this topic as this was a topic which has compelled everyone to think in that context, because the content has the power to influence hearts and minds and I believe this content can be used with regards to improving the quality of life for the international bleeding disorders organization. GNMO training continued for the three days and getting knowledge also continued. It was a great experience to learn, share and to network with people from all over the world.


After all this the world congress actually began. Since 9 months I was excited to attend the congress and to volunteer in the first ever women’s booth going to be placed during the world congress. This was the platform which gave many people (especially women with bleeding disorder) a thought to step out of the comfort zone and to make their identity around the world by networking with men and women across the globe. It has given the opportunity to make ourselves voices for women across our worldwide bleeding disorder community. Through this platform – faces, images and voices of women in our worldwide bleeding disorder have now been seen and heard.


I also got an opportunity to represent myself, women of India through poster presentations. This was also a great experience. Many people saw my posters and also ask me questions related to that which at the end left a good impression on them.

To be honest, though I think about this community and my mission constantly, after attending GNMO training and World Congress I started to dig dipper on exactly on what I want and how I wanted to make use of all opportunities  to get the fruitful results. I am young, but I am neither naïve nor uniformed. Getting reach to my vision and mission needs a hard work and it will take time.

Attending training and world congress have recharged me with full positive energy and I will make sure that the energy, connections, and momentum created this July carries into my work effectively and impact fully.

For me now the unique application of my skills and knowledge for the betterment of this community is utmost important. I have every intention of continuing my learning process which can be fruitful to this community. One thing I had realized that our global community is dependent upon us. So, Let’s continue to ramp up the efforts for our brothers and sisters who are most in need so that one day, they too may enjoy the luxury of “Pain-free life”.

Treatment for all is possible, in every sense of the phrase if we continue to work hard and work together on making that aspiration a reality. As a woman with the rare  bleeding disorder, I will continue to raise awareness for hemophilia and to achieve my vision and goal.

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