Resolve Global Health

When Stefano Pacifico's one-year-old son was diagnosed with an ultra-rare cancer, he was thrust into a reality faced by millions. Rare diseases remain underdiagnosed, underfunded, and often overlooked. The information he needed existed, but it was scattered across thousands of papers, clinical trials, and research databases, buried in complexity. So, Pacifico co-founded Epistemic AI, an artificial intelligence platform designed to bridge those data gaps, helping scientists, doctors, and patients access life-changing insights faster. Other innovators, like Saventic Health and Syndicate Bio, are also leveraging AI to revolutionize rare disease research. From using AI to scan millions of patient records for hidden diagnoses to creating genetic datasets that amplify research in Africa, these organizations are tackling rare disease challenges from all angles. 🚀 Read our latest feature to see how AI is transforming rare disease diagnosis and care, by Maurizio Arseni: https://lnkd.in/dqNUNPDp #RareDiseaseAwareness #AIinHealthcare #MedicalInnovation #HealthTech

🗣️ In South Africa, most people living with rare disease don’t just struggle for treatment—they struggle for a diagnosis. Seven-year-old Safaa’s food allergy can turn life-threatening at any moment, yet resources for her condition are nearly nonexistent. Zack de Wet’s family is in a legal battle just to access life-saving treatment. With 4.2 million South Africans affected by rare diseases, organizations like Rare Diseases South Africa are stepping in to bridge the gap where the healthcare system falls short. 🚨 Patients and families aren’t just waiting—they’re fighting. Fighting for recognition, fighting for care, and fighting to make rare diseases a public health priority. 📖 Read more in our article by Hannane Ferdjani: https://lnkd.in/dmMCAqDq #RareDiseaseAwareness #HealthcareEquity #GlobalHealth #PatientAdvocacy

🚨Today is World Tuberculosis Day — Tuberculosis still claims millions of lives and leaves deep social, health, and economic scars. This year’s theme — Yes! We Can End TB: Commit, Invest, Deliver — is a call for hope, urgency, and accountability. We are joining that call by highlighting an often-overlooked piece of the puzzle: stigma. Stigma isn’t just a barrier to care — it costs livelihoods, fractures families, and delays treatment, fueling the spread of disease. Tackling TB means addressing the fear, misinformation, and discrimination that still persist in homes, workplaces, and even health systems. This World TB Day, let’s remember: the fight against these diseases is also a fight for compassion, dignity, and justice. 👉 Read our feature: https://lnkd.in/dRzxC5WM #WorldTBDay #EndTB #GlobalHealth #HealthEquity #StigmaKills #YesWeCanEndTB

For Christhyl Ceriche, living with limb-girdle muscular dystrophy meant constantly adapting to a world not built for people living with disability. After experiencing exclusion in the workplace, she found true inclusion at a job where accessible policies and career development support changed her trajectory. Now, as Global Co-Chair of Oracle’s Disability ERG, she’s working to reshape workplace culture—from launching professional development programs for employees with disabilities to advocating for better accessibility standards. Through Dimus Chile, she’s also helping build national support systems for people with muscular dystrophy. 📖 Read about Christhyl's journey her: https://lnkd.in/dMeEhBXr #DisabilityInclusion #AccessibleWorkplaces #RareDiseaseAdvocacy #InclusiveLeadership

💔 Rare diseases go beyond medical concerns—they are a challenge for society as a whole. Imagine being told your child has a condition with no available treatment. For millions, this isn't just a fear—it's reality. People living with rare disease and their families don’t just battle medical challenges. They also face stigma, isolation & financial hardship. We must recognize the social & emotional burden, not just the medical one. 📖 Read some inspiring words by Becky McCall: https://lnkd.in/dBBPd4hr #RareDiseases #InvisibleIllness #HealthEquity #MentalHealthAwareness #YouAreNotAlone

A newborn in Australia was diagnosed with a rare genetic disease in just 48 hours - a process that once took years! Thanks to whole-genome sequencing, doctors were able to intervene before symptoms worsened, saving a life. This is the reality for a growing number of high-income countries, where genomic technology is becoming a first-line diagnostic tool. But across Africa, scientists like ThankGod Ebenezer are still working to build local sequencing capacity—so patients don’t have to rely on expensive, overseas labs. 🌍 Globally, the challenge remains: who gets access, and who gets left behind? 📖 Read our latest article by Paul Adepoju to know more: https://lnkd.in/dqsfh_uz #Genomics #PrecisionMedicine #RareDiseases #GlobalHealth

Yesterday, we brought together global rare disease leaders and advocates for a roundtable on investing in rare diseases in LMICs. The discussion underscored the urgency of scaling investment, advancing policy commitments, and fostering cross-sector collaboration to strengthen rare disease care—especially in LMICs, where access remains a challenge. A heartfelt thank you to Alexandra Heumber Perry, CEO of RARE DISEASES INTERNATIONAL, for expertly moderating the conversation and to Amgen and Sean Lybrand for their continued support in driving meaningful discussions on pressing global health issues. 📥Explore the key takeaways from the discussion and dive into our latest special report, Rethinking Rare Diseases: https://lnkd.in/dc4VrKyZ #RareDiseases #GlobalHealth Trudy Nyakambangwe Christine Mutena Prasanna Shirol Angela Tufvesson Junu Shrestha Christhyl Ceriche (She/Her/Ella) Alexandra Lianes

🧬 For many people living with rare diseases in Zimbabwe, diagnosis is a lifelong struggle. With no national rare disease strategy, limited access to genomic testing, and scarce government support, millions remain undiagnosed and untreated. As founder of Rare Disorders Zimbabwe, Trudy Nyakambangwe is working to change this—advocating for: ✅ A national rare disease registry ✅ Universal access to genomic testing ✅ Greater policy support for rare disease patients 📢 Early diagnosis saves lives. Without investment in genomics, Africa will continue to lag behind in rare disease care. 📖 Read Trudy's full op-ed: https://lnkd.in/gWgcFPk9 #RareDiseaseAdvocacy #Genomics #HealthEquity #AfricaHealth

✨ 𝗖𝗲𝗹𝗲𝗯𝗿𝗮𝘁𝗶𝗻𝗴 𝗜𝗻𝘁𝗲𝗿𝗻𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗪𝗼𝗺𝗲𝗻’𝘀 𝗗𝗮𝘆 Today, we mark International Women’s Day under this year’s UN theme: For ALL Women and Girls: Rights. Equality. Empowerment. While progress has been made—from more women in leadership to ground breaking research and digital innovations in healthcare—there’s still a long road to global gender equity. Closing the gap requires urgent, sustained action. 💡 𝗘𝘅𝗽𝗹𝗼𝗿𝗲 𝗼𝘂𝗿 𝘁𝗼𝗽 𝗿𝗲𝗮𝗱𝘀 𝗳𝗼𝗿 𝗜𝗪𝗗 𝘁𝗵𝗶𝘀 𝘆𝗲𝗮𝗿: 🔹 𝘔𝘦𝘥𝘪𝘤𝘢𝘭 𝘨𝘢𝘴𝘭𝘪𝘨𝘩𝘵𝘪𝘯𝘨 𝘵𝘢𝘬𝘦𝘴 𝘢 𝘵𝘰𝘭𝘭 𝘰𝘯 𝘸𝘰𝘮𝘦𝘯’𝘴 𝘩𝘦𝘢𝘭𝘵𝘩 https://lnkd.in/emV25zRs 🔹 𝘙𝘦𝘤𝘰𝘨𝘯𝘪𝘴𝘪𝘯𝘨 𝘨𝘦𝘯𝘥𝘦𝘳 𝘥𝘪𝘴𝘱𝘢𝘳𝘪𝘵𝘪𝘦𝘴 𝘪𝘯 𝘢𝘤𝘤𝘦𝘴𝘴𝘪𝘯𝘨 𝘩𝘦𝘢𝘭𝘵𝘩𝘤𝘢𝘳𝘦 https://lnkd.in/eCY-286n  🔹 𝘊𝘢𝘯 𝘧𝘦𝘮𝘵𝘦𝘤𝘩 𝘦𝘳𝘢𝘴𝘦 𝘨𝘦𝘯𝘥𝘦𝘳 𝘣𝘪𝘢𝘴 𝘪𝘯 𝘮𝘦𝘥𝘪𝘤𝘢𝘭 𝘤𝘢𝘳𝘦? https://lnkd.in/eh5_f-BG 🔹 𝘕𝘰𝘳𝘮𝘢𝘭𝘪𝘴𝘪𝘯𝘨 𝘵𝘩𝘦 𝘤𝘭𝘪𝘵𝘰𝘳𝘪𝘴 𝘢𝘯𝘥 𝘪𝘵𝘴 𝘳𝘰𝘭𝘦 𝘪𝘯 𝘸𝘰𝘮𝘦𝘯’𝘴 𝘴𝘦𝘹𝘶𝘢𝘭𝘪𝘵𝘺 https://lnkd.in/gZSsnUG7 #InternationalWomensDay #AccelerateAction #WomensRights #GenderEquity

🌍 Over 300 million people worldwide live with a rare disease. Yet, in healthcare policy, they remain an afterthought. That needs to change. For decades, people living with rare diseases (PLWRD), alongside researchers and advocates, have fought for recognition, diagnosis, and access to treatment. Now, the World Health Assembly (WHA) Resolution is calling for a global framework to make rare diseases a health priority. 🚨 The reality: 🔹 95% of rare diseases have no approved treatment 🔹 Diagnosis takes an average of 4+ years, even in wealthy countries 🔹 The financial and emotional burden is devastating for families Alexandra Heumber Perry, CEO of RARE DISEASES INTERNATIONAL, is leading the charge. With support from Egypt, Spain, France, Brazil, and more, this resolution demands that the World Health Organization create a Global Action Plan on Rare Diseases—a roadmap with clear targets and accountability to drive real change. 💡 The message is clear: Universal Health Coverage must include people with rare diseases. Now is the time to shift the paradigm. 📖 Read the full article by Alexandra Heumber Perry: https://lnkd.in/eRqSjkt4 #RareDiseases #HealthForAll #GlobalHealth #UniversalHealthCoverage #PolicyChange