Results 1 to 10 of about 20,725 (156)

Journeying Towards Excellence in the Care of Patients with Haemophilia and Other Inherited Bleeding Disorders From a Developing World: Insights From Tanzania [PDF]

Journal of Blood Medicine
Stella Samson Rwezaula,1– 3 Samson D Mtoba,2 Rashid A Gosse,2 Rebecca W Mwakichako,2 Abdallah Raphael Makalla,1 Martha Loiseyeki Bruckman,1 Luhongedzo Gerson Matandala,1 Linda Alphey Shao,1 Hedwiga Francis Swai,1 Michelle Sholzberg,4 Jerome Teitel,4 Amos
Rwezaula SS, Mtoba SD, Gosse RA, Mwakichako RW, Makalla AR, Bruckman ML, Matandala LG, Shao LA, Swai HF, Sholzberg M, Teitel J, Mwakigonja AR, Akinloye O   +12 more
doaj   +2 more sources

Haemophilia [PDF]

Postgraduate Medical Journal, 1997
Summary Although the nature of haemophilia has been understood for thousands of years, knowledge of its molecular genetics is recent. These X-linked bleeding disorders have diverse underlying DNA defects and, in 1992, DNA inversion within the X chromosome was found to explain half of the most serious cases of haemophilia A. The life-span
Cahill, Mary R., Colvin, B. T.
openaire   +4 more sources

The B-team: Equal but different?

The Journal of Haemophilia Practice, 2021
As a person with haemophilia B, I have known there are differences between haemophilia A and haemophilia B and their respective treatment throughout my life – though I was shocked when I learnt about the impact inhibitors can have when it comes to ...
Pembroke Luke
doaj   +1 more source

The profile of patients with haemophilia managed at a haemophilia treatment centre in Pretoria, Gauteng

South African Family Practice, 2022
Background: Haemophilia A and B are X-linked recessive bleeding disorders resulting from a deficiency of factors VIII and IX, respectively. Early diagnosis and a comprehensive approach to management is mandatory.
Lethukuthula Mafisa, Abegail N. Dlova, Vanessa Moodley   +2 more
doaj   +1 more source

Haemophilia specialist nurses’ perceptions of haemophilia B

The Journal of Haemophilia Practice, 2021
Some clinicians believe that haemophilia B is associated with less bleeding than haemophilia A, yet there appears to be little difference in health-related outcomes.
Chaplin Steve, Birkedal Maj Friberg, Crilly Erica, Fletcher Simon, Garcia Sara, Mulders Greta, Myrin-Westesson Linda, Pollard Debra, Sanigorska Anna, Uitslager Nanda   +9 more
doaj   +1 more source

Key challenges for patient registries – A report from the 1st workshop of the EHC Think Tank Workstream on Registries

The Journal of Haemophilia Practice, 2022
Patient registries are an invaluable resource for furthering the understanding of rare diseases such as bleeding disorders, providing large, pooled datasets not achievable by other means of data collection.
Bok Amanda, Noone Declan, Skouw-Rasmussen Naja, Tank Ehc Think   +3 more
doaj   +1 more source

Living, Caring, Learning – Early education, active lives and tailored treatment in haemophilia care

The Journal of Haemophilia Practice, 2023
Josipa, a haemophilia nurse in Croatia, describes how meeting 18-year-old twins with severe haemophilia A changed her views around joint health and activity in people with haemophilia.
Belev Josipa
doaj   +1 more source

Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Registries, the Hub and Spoke Model and Patient Agency

The Journal of Haemophilia Practice, 2023
At the second series of workshops for the EHC Think Tank Workstreams on Registries, Hub and Spoke Model and Patient Agency, stakeholder participants worked towards consensus on addressing challenges to progress in areas identified in the first series of ...
Bok Amanda, Noone Declan, Skouw-Rasmussen Naja   +2 more
doaj   +1 more source

Key challenges for hub and spoke models of care – A report from the 1st workshop of the EHC Think Tank on Hub and Spoke Treatment Models

The Journal of Haemophilia Practice, 2022
The hub and spoke model can deliver high quality care to a scattered population through centres of expertise supported by a network of several smaller geographically dispersed centres.
Bok Amanda, Noone Declan, Skouw-Rasmussen Naja   +2 more
doaj   +1 more source

Patient agency: key questions and challenges – A report from the 1st workshop of the EHC Think Tank Workstream on Patient Agency

The Journal of Haemophilia Practice, 2022
Patient agency refers to the abilities and capabilities of patients to act, contribute, influence and make decisions about their healthcare. It depends on both the willingness of patients to participate and the constraints imposed by healthcare providers,
Bok Amanda, Noone Declan, Skouw-Rasmussen Naja   +2 more
doaj   +1 more source