Joining together for World Sickle Cell Day to improve blood disorders diagnosis and care

Joining together for World Sickle Cell Day to improve blood disorders diagnosis and care

Joining together for World Sickle Cell Day to improve blood disorders diagnosis and care

Sickle cell disease (SCD) and haemophilia are two different types of inherited blood disorders. A drive to accelerate access to diagnosis and care for both conditions is leading the Novo Nordisk Haemophilia Foundation (NNHF) to join forces with key partners like the Fondation Pierre Fabre and the Novo Nordisk Foundation.

Since 2020, the NNHF has been joining together with partners to accelerate access to care of haemophilia and allied disorders through synergies. These efforts were reinforced with the signature in December 2021 of a strategic partnership to expand access to care in Burkina Faso together with the Fondation Pierre Fabre (FPF), which has been actively working to fight sickle cell disease for more than 15 years.

Prof Eléonore Kafondo addressing the media at the official launch of the project in Burkina Faso on 21 April 2022.

The FPF first launched the Sickle Cell Africa Initiative (IDA) in 2019, leading to a declaration signed by representatives of 12 African countries to advance care of SCD. During this year’s IDA event on 15 June, NNHF General Manager, Denise Brændgård, presented the objectives of the partnership in Burkina Faso. Together, the two projects will lead to a 47% increase in haemophilia diagnosis in the country, with access to treatment expanded to six new regions. In addition, the project team is working towards a common national programme for blood disorders.

Denise Brændgård also shared how NNHF-supported projects are expanding impact from synergies between sickle cell and haemophilia in other countries. “By partnering with the Novo Nordisk Foundation, for example, our partners in Kenya and Tanzania will be able to achieve together in three years what would otherwise have taken 12 years, with 600 healthcare professionals trained and treatment expanded to 16 centres at the end of the project . In the Democratic Republic of the Congo (DRC), our blood disorders’ consortium will enable the training of over 100 healthcare professionals, decentralisation of diagnosis and the creation of a national registry.”

(Left to right) NNHF General Manager Denise Braendgaard, FPF Director General Béatrice Garette, FPF Dr Yacouba Hassane Sande, NNHF Senior Programme Manager Stephan Destraz Morgan, FPF Head of Programmes Véronique Teyssie.

‘One Sickle. One World. One Voice’.

The NNHF joined key partners at the 4th Global Congress on Sickle Cell Disease in Paris from 16-18 June 2022. The much-anticipated event, postponed since 2020 due to Covid-19, put the focus on the paramount importance of sharing knowledge and experience while strengthening links between communities affected by sickle cell disease, along with the need to find one united voice for sickle cell disease worldwide.

Highlights from the three-day congress included meetings, high-level scientific presentations, patient testimonies and workshops. Among the NNHF partners was Prof Léon Tshilolo, Director of the Training and Research Centre of the ‘Centre hospitalier Mère-Enfant Monkole’ in Kinshasa, Democratic Republic of Congo and Prof Saliou Diop, of the National Blood Transfusion Centre, who has been supporting NNHF project partners from Senegal, Ivory Coast and The Gambia, providing training and counselling.               

Prof Léon Tshilolo presenting at the 4th Global Congress on Sickle Cell Disease, which took place in Paris on 16-18 June 2022.

Professor Léon Tshilolo, NNHF project partner from the DRC, said: “Since the launch of our ‘Hemodrepa’ project, which focuses on both haemophilia and sickle cell disease, we already see a great impact. We were able to establish diagnosis in the Kasai region, ensuring people can receive accurate diagnosis of both diseases. We raised awareness among the public and health authorities. This will lead, in the long-term, to the integration of the two diseases, which are somehow neglected, in the national health system of the DRC. It will probably make the authorities look for external financing or ensure allocation of the necessary budget to these two non-communicable chronic diseases. Finally, the project will probably be extended to other regions of the country and can serve as example for other African countries.”

Leveraging on synergies and joining forces has proven to be a successful approach to accelerate access to care in many countries. NNHF and its partners will continue to build on synergies to benefit more people with haemophilia and sickle cell disease in low- and middle-income countries.