Global Health for Rare Diseases Through Primary Care
Published: The Lancet Global Health, 2024 Link: https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(24)00134-7/fulltext
At the heart of healthcare systems, the real-world experience and satisfaction, both of those who use and those who deliver services, is an important indicator of service quality and outcomes. By aligning patient needs, science and resources, we can look beyond access to medicines to how medicines can be integrated into healthcare systems and embedded in patient pathways. We spearhead the evidence, knowledge and experience of clinical and research networks to fully realise their potential, and deliver effective meaningful health gains for the rare disease community.
Drawing on over 20 years of developing healthcare networks across the UK and Europe, we have supported the rare disease community to connect, to share and to learn, drawing from their collective wealth of experience, expertise and knowledge.
About UsPublished: The Lancet Global Health, 2024 Link: https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(24)00134-7/fulltext
Published: Orphanet Journal Rare Diseases, 2023 Link: https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02853-9
Published: Rare Diseases Orphan Drugs Journal 2022 Link: https://www.oaepublish.com/articles/rdodj.2022.04
Published: Rare Diseases Orphan Drugs Journal, 2022 Link: https://www.oaepublish.com/articles/rdodj.2022.01
We provide strategic advice and policy development on rare diseases, mental health, highly specialised healthcare and advanced therapies, looking beyond access policy, but focusing on the integration of medicines and interventions into healthcare systems and local clinical pathways.
Our strength is in the diversity of our community. Placing the needs central to advocacy, we have engaged with a diverse community of patient groups, clinical networks and industry partners to develop effective patient advocacy strategies.
We appraise clinical data and published literature, targeting the effective use of evidence to care, medicine and treatments with the optimal patient populations. We are leaders in patients-clinical partnerships to develop clinical guidelines and healthcare pathways based on their insights, addressing the population needs and the latest evidence and thinking.
Connecting communities is at the heart of our work. We enjoy developing and moderating dynamic workshops, events and webinars to translate stakeholders’ perspectives into practical actions and achievable goals, develop strategic engagement approach and foster sustainable relationship between patient groups, clinical networks and industry partners.
Our healthcare pathways strike the balance of clinically meaningful information, data and evidence, whilst being flexible enough to cope with...
Connecting communities is at the heart of our work We believe that together we are stronger, sharing our knowledge, experience...
We appraise clinical data and published literature, targeting the effective use of evidence to care, medicine and treatments with the...
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