2019: A year of strong achievements by our partners
2019 marks a year of driving improvements in haemophilia care in many countries, thanks to committed partners who have come a step closer to reaching the NNHF’s vision that all people with haemophilia or allied bleeding disorders receive care wherever they live.
The past year saw a large number of initiatives aimed at reaching out to as many people with haemophilia as possible, whether establishing or strengthening haemophilia care in regions of the world where access was fragmented or unavailable; strengthening the patient organisation to provide a stronger voice to people with haemophilia; or empowering the next generation of haemophilia advocates.
Many fruitful collaborations – across countries and regions – enabled knowledge sharing and increased expertise in the field of haemophilia and bleeding disorders. I would like to take this opportunity to thank all partners, experts in the regions and international volunteers who have dedicated their time to improving care through NNHF projects.
I would also like to congratulate our NNHF award winners. The winner of the Community Award 2019 was Dr Kibet Shikuku from Kenya. His leadership qualities played a key role in the unification of the Kenya Haemophilia Association, thereby giving the haemophilia community a stronger voice and the power to advocate for better care across the country. Meanwhile, the winner of the Project of the Year Award 2019 was India 7. Our project partner Dr Pamela Narayan harnessed the power of physiotherapy to reduce disability and joint damage among people with haemophilia throughout India.
2019 was a year of many significant achievements. The NNHF Council is proud of the high level of partner engagement and the many activities now benefiting people with haemophilia in these developing and emerging countries.
Nowadays, we are all confronted with challenging times as the spread of the coronavirus pandemic has implications for many of you and for numerous NNHF project activities.
With committed people and impactful initiatives such as those we have supported in 2019, I am confident that the upcoming years will bring our vision closer to reality despite the challenges we are facing today.
Great team players around the world!
This year has been another enriching experience for NNHF in teaming up with so many people willing to dedicate themselves to improving haemophilia care. By the end of 2019, we are pleased to have supported a total of 285 projects in 75 countries since 2005. We also saw NNHF projects running for the first time in four new countries: Angola, Lesotho, Mozambique and Senegal.
From the NNHF award winners to projects which have brought significant improvements through a variety of ways such as training initiatives, strategic media awareness-raising, social media campaigns, cross-border knowledge sharing and engaging youth, there are huge achievements to recognise among our project partners throughout 2019.
You will have the opportunity to read a selection of better practices from NNHF projects in the Highlights section. Some examples include South Africa, where the project team has been shaping the future of haemophilia care; northern Myanmar, where the team showed the immense power of collaboration between healthcare professionals, the patient organisation, people with haemophilia and their families; and Chile, where tailored care is now possible thanks to an innovative approach and use of technology.
Achievements such as these make myself and the NNHF team sincerely proud to have worked with partners who are exceptional in their energy and desire to improve the lives of people with haemophilia: healthcare professionals, patient organisations and engaged individuals, as well as people with haemophilia who have been outstanding personal advocates for the need for better care.
NNHF Impact assessment results
healthcare professionals trained1
centres established or strengthened1
of these are satellite and primary care sites1
National care guidelines
updated, printed or distributed through NNHF projects by 51% of partners
per patient observed by 90% of partners
“Following the training of healthcare professionals and education provided to patients and their families, we have had 24 months without admission to the emergency department due to spontaneous bleeding. It is a great achievement.”
Reduced distance to receive care
according to 92% of partners
“Following the healthcare professional training, two referral hospitals in different regions of the country have been requesting treatment so that haemophilia patients can be treated close to their homes. Furthermore more healthcare professional are now interested in haemophilia.”
Improved quality of care
with 91% of partners using national guidelines to provide better care
“Physiotherapists became more efficient in managing haemophilia patients, nurses acquired automatisms in caring for people with haemophilia, surgeons and dentists became more confident in taking care of haemophilia patients.”
Diagnosis and registry
lab technicians trained1
labs established or strengthened1
patients have been re-tested or newly diagnosed1
countries developed or improved registries1
Improved quality of diagnosis
through NNHF supported activities, say 100% of partners
“After the last lab training, diagnosis improved and accelerated. Now we are able to make more accurate diagnosis and identify the type of bleeding disorder.”
Increased diagnosis rate
observed by 100% of partners
“By the end of the first NNHF-funded project, in Mali the number of people diagnosed with bleeding disorders had risen from 42 to 123, and the number of haemophilia patients requesting care increased regularly. And we are continuing to raise awareness to identify undiagnosed people with haemophilia.”
to continue supporting diagnosis activities according to 100% of partners
“Advocacy, awareness and meetings with the health authorities have lead to increased budget allocated to treatment for people with haemophilia.”
Education and empowerment
people with haemophilia and family members educated1
Empowered leaders within the patient organisation
say 97% of partners
Members active in engaging with authorities
say 100% of partners
Improved understanding of the condition
leading to overall health improvements, observed by 100% of partners
“The patients who participated in the project reported that knowing and putting into practice life skills allows them to have a different perspective of the disease. In addition to being able to cope with the symptoms of the disease, they generally improve their life conditions in relation to their personal projects and witness an improvement in their family and personal relationships.”
Stronger organisational structure
according to 100% of partners
“Our project supported training for the patient organisation and established new patient organisation chapters in the provinces. Thanks to this, the connection between doctors and patients will be easier through the provincial chapters.”
Changes in policy around bleeding disorders
say 93% of partners
“Thanks to the support of NNHF over the years, in 2019 the Kenya Haemophilia Association has been able to submit a petition to Parliament. Now policy changes are under implementation by the government to improve care for haemophilia patients.”
NNHF Project of the year award 2019: India 7
Led by project partner, Dr Pamela Narayan, India 7 has harnessed the power of physiotherapy to reduce disability and joint damage among people with haemophilia throughout India. Before the India 7 project started, there were very few if any physiotherapists in India with the right knowledge and expertise to treat people with haemophilia.Read more
NNHF Community award 2019: Dr Kibet Shikuku
The words that come up time and again when people talk about Dr Shikuku are ‘leadership, dedication and empowerment’. These qualities played a key role in the unification of the Kenya Haemophilia Association (KHA), giving the haemophilia community a stronger voice and the power to advocate for better care across the country.Read more