In January, Alain Weill, President of the World Federation of Hemophilia (WFH), visited two Hemophilia Treatment Centres (HTCs) in Bengaluru, India, delivered three talks, and participated in the Hemophilia Federation of India (HFI) board meeting.
At the HFI board meeting, HFI representatives presented the organization’s accomplishments, as well as its vision for 2020. During his talk, Weill applauded HFI efforts in advocating with the government for the need to develop at least one Hemophilia Comprehensive Care Centre in every state, as well as one Hemophilia treatment centre in every district. Weill also suggested that the HFI executive committee focus on identifying more patients in the country. So far, 19,000 people with hemophilia have been identified in India, but given India’s large population, the expected number is closer to nearly 120,000.
Weill thanked the HFI for the smooth flow of Humanitarian Aid distribution in the form of 54 million IUs of CFCs to 62 treatment centres in India in 2017. Just last year, many patients benefitted from donations, which helped make it possible to provide low-dose prophylaxis to pediatric patients, perform 430 surgeries, and offer 35 patients with inhibitors immune tolerance induction (ITI) treatment. All in all, 5,000 people benefited from the WFH humanitarian aid.
Alain Weill also visited two hemophilia treatment centres after HFI board meeting on the first day of his visit to gain insights from the medical care professionals there.
Alain Weill had the opportunity to attend the “International Workshop on Prevention and management of Hemoglobinopathies and Hemophilia” as a special guest and keynote speaker in the inaugural session. The workshop was attended by delegates from 11 Asian countries. At the workshop, Weill made a presentation on the global situation of hemophilia and the work the WFH has done to support the community. Weill also chaired two sessions and joined the delegates in the official release of a postal stamp created to commemorate the workshop. During this visit, Weill also had separate meetings with delegates from different countries to see how the WFH could best support their needs.
Weill also made two presentations at the 5th National Hemophilia Care Meeting 2018 in New Delhi. The first presentation was on the WFH Humanitarian Aid Program. The second presentation covered the WFH-initiated World Bleeding Disorder Registry (WBDR).