ERN GENTURIS’ Post

✍️ Survey on expertise, centers & networks for rare disease Rare Diseases International (RDI) is launching a survey to map rare disease expertise, care-providing centers and networks across various countries. The survey aims to identify available expertise, and understand its organisation, whether through hospitals, centers, or specialised departments, along with their characteristics. The anonymous survey takes less than 5 minutes, and is available in English and Spanish. Survey link: https://bit.ly/3Bv8gDC RDI is the global alliance of people living with a rare disease of all nationalities across all rare diseases.🌏 RDI’s mission is to be a strong common voice on behalf of rare disease patients around the world, to advocate for rare diseases as an international public health priority and to represent its members and enhance their capacities. #RareDisease #RareCare #RareDiseaseSupport #Research

This study aimed to assess the exposure to #secondhandsmokeexposure in public spaces frequented by minors using on-site observations and questionnaires. - By Sun Y et al - At TID Tobacco Induced Diseases - European Publishing DOI: https://lnkd.in/dTebfjP4

#NewBlogAlert The finance needs for diseases like neglected tropical diseases #NTDs far surpass traditional aid and government budgets💰. Now more than ever, developing new #diagnostics 🔬 and #treatments 💊 for NTDs will need innovative financing models. This is where mechanisms like #VaccineBonds, #AdvanceMarketCommitment, #PooledProcurement, and #DebtSwaps could shine light ✨ and pave the way💡   Check out our latest blog from Ngozi Erondu-Manyonganise, PhD MPH, Technical Director Global Institute for Disease Elimination (GLIDE) and Simon Bland, CEO GLIDE as they delve into Innovative Approaches to Sustainable Health Financing Read more >>> https://lnkd.in/dXznRUnS

Many discussions this week with ministers from several TB high burden countries and major funders about innovative financing solutions to bridge the enormous funding gap for TB. The investment case is strong which is why ending TB is in the top 12 global priorities set out in the recent Copenhagen Consensus statement. Some thoughts on funding models in this blog:

Unveiling the Untapped Potential: Rare Diseases in APAC. Gain exclusive insights into the increasing focus on rare diseases throughout the #APAC region. In this whitepaper, part 1, 𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲𝘀 𝗶𝗻 𝗔𝗣𝗔𝗖: 𝗧𝗵𝗲 𝗨𝗻𝘁𝗮𝗽𝗽𝗲𝗱 𝗣𝗼𝘁𝗲𝗻𝘁𝗶𝗮𝗹, explore our comprehensive analysis of the challenges encountered, the maturity levels of care delivery, and the immense potential within these markets. Click here to download your copy: https://bit.ly/46qpvBz #IQVIAMIDAS #raredisease #whitepaper #healthcare

RDRP, together with MPS Society UK, here for those with rare diseases and Prof Derralynn Hughes, explored the physical and emotional burden of Fabry disease and how these affect UK patients’ lives. View the full results of the qualitative interview study here https://buff.ly/4ajtvF6 #FabryAwareness #rarediseases #research

Very interesting and encouraging read from our own Vijay Yajnik, MD, PhD, on the power of collaboration in addressing critical patient needs in #GI! So important to advance understanding of underdiagnosed diseases like #EoE through innovative, patient-focused research. https://lnkd.in/gSFEeYxw #TeamTakeda

Missed our 2024 Trends Influencing Rare Disease series in February? It's not too late to hear #AvalereExperts weigh in on the #raredisease landscape. Hear their take on: 📽 US and ex-US regulatory approaches: https://lnkd.in/e3HqgcvM 📽 Patient centricity in the rare disease space: https://lnkd.in/eSMdcPc4 📽 FDA and market access considerations: https://lnkd.in/eGUuV7XX 📽 Policies shaping treatment development and access: https://lnkd.in/eGUuV7XX

This research aims to analyze the prevalence of different #tobaccoadvertisingstrategies on digital platforms and to assess the impact of exposure to these strategies among youth. - By de Haro D et al - At TID Tobacco Induced Diseases - European Publishing DOI: https://lnkd.in/dYz7Bc44

How can we work together to reduce the burden of #malaria and other diseases? This is one of the four pillars of MMV’s 2024–2030 strategy, and the one that can best leverage our 25 years of experience in drug discovery to the benefit of the wider global health community.    In this video, MMV’s Senior Director of Drug Discovery, James Duffy and H3D Foundation CEO Susan Winks go beyond the buzzwords to present a vision of how we can embrace new tools and ways of thinking to make gains against all diseases affecting vulnerable populations. Watch it here: bit.ly/3WnqU8j