Juliette Vila Sinclair-Spence’s Post

People with rare diseases are often the true experts in their conditions, navigating complex medical systems and advocating for their health daily. It's crucial that we listen to their experiences and insights, as they provide invaluable perspectives that can lead to better care, research, and understanding. By learning from them, we can drive meaningful change and create a more compassionate, patient-centered healthcare system. Let’s amplify their voices and collaborate to make a difference! #RareDisease #PatientAdvocacy #ListenToPatients

We are the experts living with Acanthamoeba Keratitis. Let us share the patient perspective and the evidence we have collected! We are the ones who have gone through or are currently experiencing a rare disease. We are living it, not you. We are the ones suffering, not you. We are the ones feeling the pain, not you. We are the ones hidden in the dark, not you. We are the ones isolated from the world, not you. We are the ones afraid of going blind and losing our eyesight, not you. We are the ones experiencing how debilitating and excruciating it is, not you. We are the ones misdiagnosed, not you. We are the ones losing our jobs, not you. We are the ones emptying our savings, not you. We are the ones advocating for the right treatment, not you. We are the ones fighting with the health insurance companies to cover our costs, not you. We are the ones feeling how toxic the drugs are to our eyes, not you. We are the ones who know our limits, not you. We are the ones who understand how others can help us make our experience more bearable, not you. #Resolution4Rare #HealthForAll #NoOneLeftBehind #RareDisease #AcanthamoebaKeratitis #Eurordis #PatientPerspective #GiveUsAVoice

People-centered Universal Health Care means putting Persons Living with Rare Diseases at the core of their own healthcare. A WHA Resolution asking for a Global Action Plan on Rare Diseases will help member states develop an integrated approach to care across the life course guided by principles of evidence-informed policy and practice, intersectoral action, and the empowerment and active involvement of Persons Living with a Rare Disease and their families and carers. An integrated approach like this ensures that healthcare systems are inclusive, responsive, and capable of addressing the complexities of rare diseases, improving quality of life and health outcomes for PLWRD. #Resolution4Rare #UHC #HealthforAll #PLWRD

I believe advocacy for active involvement of Persons Living with a Rare Disease (PLWRD) in evidence-based policy shaping practices needs to be promoted. Patients’ perspective can fill the gaps in understating the burden of rare diseases, and so it paves the road for more accurate decisions. For sure, a Global Action Plan will support the PAGs in each country with more powerful negotiations with their respective local healthcare decision makers.

People-centered Universal Health Care means putting Persons Living with Rare Diseases at the core of their own healthcare. A WHA Resolution asking for a Global Action Plan on Rare Diseases will help member states develop an integrated approach to care across the life course guided by principles of evidence-informed policy and practice, intersectoral action, and the empowerment and active involvement of Persons Living with a Rare Disease and their families and carers. An integrated approach like this ensures that healthcare systems are inclusive, responsive, and capable of addressing the complexities of rare diseases, improving quality of life and health outcomes for PLWRD. #Resolution4Rare #UHC #HealthforAll #PLWRD

The need for timely access to early screening and treatment of chronic kidney disease is greater than ever. GloPAKH envisions health care systems that prioritize access to comprehensive screening & early treatment. Learn more at https://lnkd.in/dt5DdaNd #ForKidneyHealth #CKD

As result of the increasing health burden of Non-Communicable Disease (NCD), primary health care is the right level of service delivery for under-resourced setups. Integrated and accessible CD and NCD in primary health care might increase service utilisation and coverage simulteneously.

At the inaugural session of Regional Commemoration of #WorldDiabetesDay 2024, Dr Guy Fones, Director, Noncommunicable Diseases, WHO, said, “In nearly all countries, the chronic underinvestment in health services has created a significant gap between the need for and availability of effective prevention and quality care and support for people living with or at risk of noncommunicable diseases. To close this gap, health systems must be reoriented towards primary health care as a foundation for universal health coverage and health security.” #beatNCDs

Strong and effective health systems are a very strong prerequisite to reducing the disease burden and to achieving the health SDGs, rather than the outcome of increased investments in disease control. Ofcourse, specific disease investments brought positive spillover here and there; but make no mistake, the wider health system is left weak and not progressing. This is due to de-prioritizing system-wide building. As a result of this, health systems strengthening (HSS) has risen to the top of the health agenda in #Somaliland. Scaling up efforts such as stand alone HSS strategy and monitoring HSS performance are on track. #MoH #UHC #HSS #SL

I am proud to share that I have successfully completed the "Microplanning to Guide Implementation of Preventive Chemotherapy to Control and Eliminate Neglected Tropical Diseases" course. This course, offered on OpenWHO.org by the WHO Health Emergencies Programme, has enriched my understanding and skills in combating Neglected Tropical Diseases. #NeglectedTropicalDiseases #Healthcare #ContinuousLearning #WHO #PublicHealth #ProfessionalDevelopment #OpenWHO