My name is Novi Riandini, 50 years old. I am married to Muhammad Gunarso, who has Hemophilia B since 1998. At the beginning of our marriage, I encountered many difficulties finding information about Hemophilia. There were many things I didn’t know about how to care for a husband with hemophilia with limited treatment and medication options at that time.

Eventually, using my experience in Public Relations, I reached out to several doctors and parents of patients to establish a hemophilia community in Indonesia. Alhamdulillah, in the first 5 years, there was an increase in the number of diagnosed Hemophilia patients in Indonesia thanks to the media campaigns we conducted. Initially, only 98 people with hemophilia were recorded as diagnosed, but this year we have recorded almost 3000 hemophilia patients across Indonesia. We did a lot to educate the public, from holding seminars/trainings for medical professionals and the general public, sharing stories in print and electronic media, and many other PR campaigns.

The improvement in treatment and medication availability has also increased, balanced by government support through our national health insurance called BPJS.

Thank you, World Federation of Hemophilia and Indonesian Hemophilia Society.

Happy World Hemophilia Day, everyone.