RARE DISEASES INTERNATIONAL’s Post

Today is the first day of the Global Week for Action on Non-Communicable Diseases (NCDs). NCDs collectively remain the #1 cause of death and disability worldwide, accounting for 74% of all deaths. This annual Global Week for Action on NCDs seeks to ensure NCD prevention and management get the attention and action they deserve. Everywhere, for everyone. Looking ahead, the 4th UN High-Level Meeting on NCDs is planned for September 2025. At that critical moment, world leaders will decide what place NCDs have in the list of global health priorities. This is where pledges must become reality. Learn how to get involved in the campaign at: actonncds.org #LeadOnNCDs #ActOnNCDs #CVHealthForAll

"Talking about your health with others can be an important form of social support and can help you achieve positive health outcomes." We agree! As an Age-Friendly approach, we offer tools such as MyHealthPriorities.org, which helps older adults and their families identify what matters to them, especially when faced with many complex health conditions. Sharing these health priorities with family, friends, care partners, and your healthcare team is an important step to aligning care with what matters most. Read more about Age-Friendly Care and What Matters Most in this post from The John A. Hartford Foundation. #AgeFriendly #OlderAmericansMonth #geriatrics #patientcenteredcare

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

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

📢🌍 What's your vision for the UN High-Level meeting on NCDs in September 2025? With NCDs causing 90% of the disease burden in WHO European Region, it's time for action! ⏳ Let's commit to reducing premature mortality and make our voices heard! Whether you're a person with lived experience, part of an organization, or representing a member state, join the conversation! 🗣️💡 Learn more and participate in the international consultation here: 👇#NCDs #2030Agenda 🌐

Which are the priority areas for governments to act on to prevent and manage NCDs, and promote mental health and well-being? Provide your input to this WHO consultation 👇🏼 and support Gauden Galea in his mission #onTheRoadto2025 UN high level meeting on #NCDs EuroHealthNet

Great opportunity for #yourvoice for #chronicdiseases #NCDs to be heard and amplified at the highest-level global health meeting, the UN General Assemby in Sept 2025. My #priorities: 1. Child health and well-being, and in particular stemming the rising global prevalence of #childhoodobesity According to #WHO in 2022 over 390 million children 5-19 years world-wide were living with overweight of which 160 million with obesity 2. Implementation of the WHO Health Service Delivery Framework for Prevention and Management of #Obesity https://lnkd.in/dR2-ZetZ According to #WHO in 2022 1 in 8 people in the world were living with obesity. 3. Better understanding of disease manifestation and intervention needs specific to women. #genderequity in #medicine #research #health

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

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