Members gather in Kathmandu

Families from beyond the valley met in Kathmandu to share knowledge and connection.

Why the room mattered

The same week as provincial advocacy in March 2024, many families entered one room who had never met another parent facing haemophilia. For some, it was the first time they heard a swollen knee described in the same words they use at home.

Clinicians and volunteers answered questions about registration, travel to centres, and what to expect after diagnosis. That conversation cannot be replaced by a single pamphlet.

Registration still open

If you were in the room and have not completed membership details, call the Anamnagar office on 01-5172729. Registration helps NHS represent the community in government meetings and plan events.

If you could not travel to Kathmandu, ask the office which chapter or contact is nearer your district.

What people took home

Phone numbers of other families, not only of staff. Paper lists of hospitals that ran assays that month. A sense that diagnosis is not the end of community.

Meetings end, but relationships continue. Many chapters started because someone refused to let distance be the last word.

This page is general information from Nepal Hemophilia Society. It is not a diagnosis or a treatment plan. A bleed, a head injury, or bleeding after an accident needs urgent hospital care. Ask your treatment centre before you change any treatment.