Hannah Noerenberg’s Post

Mon 2024-05-13 03:12 Reminder: WHO Townhall for civil society and affected communities on the operationalization of the 2023 UN High Level Meeting Political Declaration on TB The World Health Organization (WHO) is convening a civil society Town Hall in close collaboration with the WHO Civil Society Task Force on Tuberculosis. The Town Hall will focus on the urgent actions needed to translate the 2023 TB Political Declaration into action, through the civil society lens and community empowerment. The WHO Director-General will provide the keynote address, and the event will be led by WHO leadership and members of the Task Force, with the following objectives: 1. Highlight Task Force priorities in ensuring urgent translation of the commitments in the 2023 Political Declaration of the 2023 UNHLM on TB into action;  2. Engage with participants in an open dialogue, to harness their inputs and recommendations on the priorities for the Task Force and their engagement with the broader civil society and affected communities.  The event is open to all stakeholders in the fight to end TB, and we especially invite civil society and affected communities to participate in the discussions. The event will be held on Tuesday,14 May from 14h30 to 15h50 CEST. Simultaneous interpretation into French, Spanish and Russian will be available. Please register here.  A zoom link will be shared upon registration.   Download the flyer and promote on social media, here.

📰 Check out the interview with the ERN Coordinators group chair and the Coordinator of ERN-RND, European Reference Network for Rare Neurological Diseases, Holm Graessner, for the #rarediseaseday2024, highlighting  the role of the #ERNs in improving care and treatment of patients with rare diseases and importance of #EUfunding for the activities of the ERNs. Available here: https://lnkd.in/gUR8Exfs #rarediseases #EU European Commission European Health and Digital Executive Agency (HaDEA) #ERNs #interview #communication #eu EU Health and Food Safety

💡 Discover how European AIDS Treatment Group leads community engagement within the RBDCOV_EU consortium. From reviewing study designs to ensuring participant-friendly contents, our efforts are centered around involving communities every step of the way…. Because “Nothing about us without us!”.   Read our latest specialised article by Apostolos Kalogiannis, European AIDS Treatment Group CAP Member!    👉📑 https://lnkd.in/dHjT63fK   #InnovationKillsTheVirus #RBDCOVNews

Now out... Issue 18 of Canadian Shareable News. See https://lnkd.in/e5avFXEi. Here are my favourite gems found this week: HISTORY COMES IN PATTERNS In an interview with Iranian-American entrepreneur Patrick Bet-David, the US demographer Neil Howe discusses recurring historical patterns or “turnings” as well as “generational archetypes”. For generations there has been a swinging back and forth between a focus on building institutions to support the collective and on periods of individualism. https://lnkd.in/eRhAGpFq & LEARNING FROM HISTORY Canadian investigative journalist, Matthew Ehret, provides a look back to the era of the attempted banker’s coup on the US President in the 1930s. Entitled “Why assume there will be a 2024 election?” the film explains the ties between the US banking oligarchy of the time and the fascist government of Italy’s Benito Mussolini.     It highlights how the highly decorated General Smedley Butler was recruited to participate in the plot and how his loyalty to the values of the American constitution prevented that government takeover. See: https://lnkd.in/eTGKPVAi Currently evolving history is collected under the heading CLOSING DEMOCRACIES on page 5. And we have a new Homegrown Hero, Judge Rickcola Brinton. I also tried to make some complex political content easier to understand with definitions and an illustration. See what you think!

Did you know? 1 in 10 of us in Northern Ireland could be at risk of haemochromatosis, the 'Celtic Curse.' Not many people had heard of this life-threatening condition until recently. But we created (and funded) an NI-wide campaign that more than DOUBLED public awareness 👏 Click the link to find out how and why we did it 👇 https://lnkd.in/eedPg9Gw Haemochromatosis UK #Haemochromatosis #GenesisGoodThinking 

"Trinidad and Tobago stands at a crossroads, where decisive action today can pave the path to a healthier tomorrow. The onus lies on the country’s health and legislative authorities to muster the resolve and commitment required to confront NCDs head-on. Failure to do so not only jeopardises the well-being of the nation’s citizens but also undermines the nation’s socioeconomic development." My letter to the Trinidad Express Newspapers published today #TrinidadandTobago #chronicdiseases #ncds #noncommunicablediseases https://lnkd.in/en9zbPX7

📣We are pleased to announce the launch of the second version of the anonymous survey by ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases), The Lancet SCD Commission, and ASCAT to gather the perspectives of people affected by sickle cell disease (patients, parents, caregivers, partners, siblings). Our first survey received about 200 responses, but now we aim for a broader audience. This version is more accessible, with simplified language and translations into: French, German, Greek, Dutch, Italian, Spanish, Portuguese, Arabic. ▶️Find the translation by clicking on “Translations” after the Welcome Page  “Welcome!”▶️ and then clicking on below on “Next.” Our goals:  ✅Amplify the voices of people living with sickle cell disease.  ✅Collect evidence for advocacy.  ✅Have a direct impact on research, education, and policy.    ✒️Participate in the survey: https://lnkd.in/df5CcGwP ⏱️It will take no more than 10 minutes to complete!  Even if you participated in the initial survey, we kindly ask you to contribute again. Together we can improve outcomes for SCD and identify additional unmet needs. Thank you for your support!🤝 #ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #WorldSickleCellDay

ECLIPS FUNDING ANNOUNCED Funding has been announced for the pilot phase of the Elevated Childhood Lead Interagency Prevalence Study (ECLIPS). This will test a new microsampling method in the real world. If successful, this could lead to a national survey of blood lead concentrations in children. The survey may provide evidence to remove one of the barriers to screening in the UK and prompt the government to do something to prevent lead poisoning. However, we should not wait. Estimates suggest that 200,000 to 300,000 UK children have lead poisoning today. We have to fix this. https://lnkd.in/etH33bbV

Bioethics services are often perceived as not being fit-for-purpose to deal with contemporary and often time-sensitive issues. In our recent paper from our European Research Council (ERC) funded TechChild project, we highlight the need for time-sensitive, flexible bioethics services, with increased inclusion of palliative care input as early as possible to support children and their families. ECHO - European Children's Hospitals Organisation All Ireland Institute of Hospice and Palliative Care EAPC Palliative Care Children’s Health Ireland (CHI) LauraLynn, Ireland's Children's Hospice

Fact over fiction. During a difficult time in the world’s history the learnings are now being reported by Baroness Hallett and I hope we can be less clonal in our thoughts and organisational structure and stay away from the group mentality and recommendations especially in the scientific, civil service and policy community as the report suggests and appreciate that in science we should be open to and consider all hypothesies and then come to conclusions. As the covid inquiry states the UK 'prepared for the wrong pandemic' and recommendations for an independent body to align national strategies should be implemented for the next pandemic! https://lnkd.in/e_GQ7fue #nationalpandemicpreparedness #covid19pandemic #sciencepolicy #covidreport #nationalsafetypreparedness #nationalpandemicpreparedness #nationalpolicy #scienceandtechnology #genomics