A united bleeding disorders community of Pakistan

The current Pakistan project adds to the success of the fifth NNHF project in Pakistan by continuing to build the capacity of the bleeding disorders community in the country. The Hemophilia Foundation-Pakistan (HFP) showed the world that a united and empowered bleeding disorders community has a stronger voice, and that better practice sharing across regions can improve haemophilia care across the country.

A stronger voice for Persons with Bleeding Disorders

The capacity of Hemophilia Foundation-Pakistan was enhanced through the fifth NNHF project in Pakistan. However, out in the regions several different groups were still actively working to support persons with bleeding disorders. There was a need to unify the haemophilia community of Pakistan under the same national body, in order to provide a stronger voice to people with bleeding disorders in a country where diagnosis and care were available only in big cities.

Through the sixth NNHF project in Pakistan, the National patient organisation and its provincial chapters in the regions were empowered to take responsibility for improving haemophilia care in their provinces thus ensuring their impact is cohesive and sustainable.

This significant step forward in access to care came about when the community activist, Mr Masood Fareed Malik, decided to form an umbrella organisation – the “Hemophilia Foundation-Pakistan (HFP)”. He worked in close collaboration with healthcare professionals and the five chapters (Lahore-Punjab, Karachi-Sindh, Quetta, Balochistan, Rawalpindi-Punjab and Peshawar-Khyber Pakhtunkhwa) to unify the voice of the separate haemophilia patient organisations already serving the community.

Enhanced engagement

This resulted in a united organisation, acting as the main coordinating body for all the haemophilia chapters and haemophilia treatment centres in Pakistan. Through the sixth NNHF project in Pakistan, specialized working groups were also established. They included a National women’s group, a National youth group and a National Medical Advisory Board among others.

“The shift to a united organisation was not without challenges”, explained Mr Masood Fareed Malik, project director, “but people saw that with greater community involvement and uniting our efforts we can create greater change for people with bleeding disorders in Pakistan”.

The HFP emerged as the best way to succeed in improving haemophilia care together.

A tangible difference

This newly united approach led to concrete outputs including building the capacity of the patient organisation’s members, sharing better practices across the regions, defining a clear strategy for every sub-group and leading activities that strengthened haemophilia care across the country.

“Through NNHF Pakistan 6 project, we’ve come a long way and now we’re better equipped to carry out our role as community activists,” says Faizan Baig, project coordinator.

The Future

Advocacy with government is the next step in further advancing hemophilia care in Pakistan. The work done under the fifth and sixth NNHF projects in Pakistan has provided a great momentum to the ongoing work and has also made the leadership further capable enough to successfully carry-out this task. The project has made us to get to the point where we are in dialogue with the government health authorities and are negotiating with them. They are also showing interest to work for hemophilia in Pakistan now.

“HFP is working to ensure that one day all people with bleeding disorders have access to needed treatment, care and support no matter that at which part of Pakistan they are. With the Pakistan 6 project, we’ve taken a major step forward to achieve this objective” says Dr Saeed ul Hassan, project applicant.

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