Impacting care - the haemophilia podcast

Over the past 15 years, Denise Braendgaard, General Manager at the NNHF, has witnessed great progress in access to haemophilia care in countries where the NNHF has been supporting projects. She has also seen the growth in people and organisations she has worked with. In this episode she shares her experience and reflects on the importance of receiving constant feedback, listening to partners’ ideas, being inspired on ways to develop as an organisation to be more efficient and benefit more people.

Impacting Care podcast: Hear from our partners In 2022 we have talked to people with haemophilia, healthcare professionals, members of patient organisations or expert volunteers, learning how they are impacting care in their country or region.   Listen to special episode presenting you with highlights from three guests’ episodes in a bitesize format.

After attending a scholarship programme in France, early in his career, Prof Saliou Diop realised that a lot had to be done to improve haemophilia care in his home country of Senegal. Since then, he has been a key contributor to changing the landscape of haemophilia care in Africa over the past years, having co-authored more than 80 peer-reviewed articles, trained healthcare professionals from African countries and collaborated with numerous international experts, to share knowledge for the benefit of haemophilia and sickle cell patients. Hear from Prof Diop how haemophilia patients can benefit from an integrated management of blood disorders such as sick cell disease, in particular in regions where resources are limited.

Over a broad and distinguished career in the UK and more than a decade volunteering in Africa and Asia, Dr Kate Khair has become an important champion for haemophilia nurses. Dr Kate shares about her experience as a volunteer and articulates how nurses play a crucial role not only in delivering care but also educating, training and communicating, to ensure people with haemophilia and family members can benefit from a holistic approach.

Ms Wajiha Javaid has been working with the Haemophilia Foundation – Pakistan (HFP) since she was 16. She is currently Executive member of HFP and coordinator of the National Women’s group, which was officially formed in 2017.  She shares her experience as a woman living with Von Willebrand disease and part of the core team at HFP which worked on developing the National Women’s group to provide a safe place for women to meet, exchange and learn from each other. She is proud to have seen a lot of girls empowered to blossom over the years.

When Novi Riandini got married to her husband, it was the day a close relationship with haemophilia started. At the time, it was very difficult for her to find any source of information related to haemophilia. Novi has been instrumental in building the patients organisation, from a parents’ support group to a multi-sector organisation in 2005, when the Indonesian Hemophilia Society, formed by doctors, nurses, people with haemophilia and families was established and officially recognised by the Ministry of Health.

Clerment Masoabi Sefojane is an active young adult, living with severe haemophilia A in Bloemfontein, South Africa. He got involved with the South African Haemophilia Foundation (SAHF) at a very young age, at about 14 years old when he was invited to share is journey as a boy living with haemophilia at a National Youth Dialogue. He realised how important it is to have a platform to share knowledge and learn. He became actively involved activities organised by the patient organisation, to then be elected Chairperson of the SAHF Youth Council and until recently he was also the Treasurer of the Haemophilia Youth of Africa. In this episode you will hear about the importance of giving an active role to young members of the organisation, empowering them to take on a leadership role in the future.

Just a few years ago, people with hemophilia in the northern part of had to travel 6 to 9 hours by bus or train to receive care and treatment. But thanks to a young doctor Ciprian Tomuleasa and his team in the city of Cluj Napoca the situation has significantly improved. The laboratory in Cluj Napoca has been upgraded to provide quality diagnosis, a new national registry has been established and haemophilia care in north Romania has been standardised.

Dr Laura Villarreal, paediatric haematologist and professor at the Faculty of Medicine at the University in Nuevo León - Mexico, has built up the haemophilia clinic at the University Hospital in Monterrey from scratch. In this episode you will hear about her vision of a multidisciplinary care team, how she was able to build it, and what it means for people with haemophilia and their families. https://nnhf.org/wp-content/uploads/2021/10/NNHF-Podcast-Impacting-Care-EP02-Dr-Laura-Villarreal_Spanish.pdf

Kenya has come a long way since its first project supported by the NNHF in 2012. Dr Kibet Shukuku walks us through the journey he has undertaken with his team at Kenya Haemophilia Association, and lately joining forces with the sickle cell community and with Tanzania to build the future of haemophilia care. In this podcast he talks about the steps to build up care in Kenya, the challenges on the way, the achievements and how joining forces can accelerate access to care for people living with bleeding disorders.