WFH NETWORK

Outreach and data collection workshop held in Asia

The World Federation of Hemophilia (WFH) organized a regional workshop on outreach and data collection for South Asia and East Asia Countries in Colombo, Sri Lanka from April 6 to 8, 2018. A total of 19 national member organization (NMO) leaders, government and hemophilia treatment centre (HTC) representatives participated in the workshop from six countries: India, Bangladesh, Nepal, Sri Lanka, Maldives, and Mongolia.

The data collection part of the workshop focused on how to effectively identify, collect, analyze, and present relevant data to support the case for care. The objective was to highlight the value and importance of data collection; enhance research and analysis for the purpose of improving treatment and supporting health planning; provide practical guidance on how to collect data and how to use data for advocacy; and empower countries to better advocate and support people with bleeding disorders.

Najmul Alam, Executive Committee Member, Bangladesh Hemophilia Society

“[Before] I had some kind of knowledge about outreach and data collection, but I now I have concrete knowledge and a formal approach and tools.”

The session on outreach—the theme of World Hemophilia Day 2019—focused on ways to help national hemophilia organizations and governments carry out an outreach program to find new patients with hemophilia or other inherited bleeding disorders who have not been diagnosed or who are underserved by healthcare services. The workshop explained what patient outreach is, and described key steps and common challenges of outreach campaigns. Case studies from different countries illustrated various approaches, and the lessons learned.

World Hemophilia Day - April 17, 2019

Reaching Out: The First Step to Care

On April 17 of this year, our community will come together to celebrate World Hemophilia Day. The theme of this year’s big day is “Reaching Out: The First Step to Care”. For the WFH, a big part of the first step to care is the outreach and identification of undiagnosed people with bleeding disorders.

Patient outreach and identification is about finding individuals with hemophilia or other bleeding disorders—including von Willebrand disease—who have not yet been diagnosed, or whose health needs are not being met by healthcare services. These patients can be found through awareness-raising campaigns and educational activities.

You can help too! This April, show us that you care and that you are these to support the patients and caregivers in our community. Be part of World Hemophilia Day 2019 and help make a difference.