Global ARCH

?? Together, We Can Transform Invisible Hearts into Visible Change Every year, millions of babies, children, and adults with childhood-onset heart disease face preventable deaths and lifelong challenges—too often without the care or support they desperately need. At Global ARCH, we see this crisis as a call to action. That’s why we’re launching the Invisible Hearts, Collective Action Initiative—a global movement to empower patients, families, and communities to take charge of their health, advocacy, and future. ? Our Bold Goals to Achieve by 2030: ? 500,000 lives impacted annually—by equipping and empowering patient and family organizations to deliver vital support, hope, and resources. ? Strengthening 150 patient- and family-led organizations in 75 countries, alongside key collaborators to drive change. ? Advocacy that breaks barriers and reaches local, regional, and global platforms, ensuring childhood-onset heart disease is a priority on the global health agenda. ?? Why Your Support Matters Behind every number lies a story—a baby’s life saved by timely surgery, a family finding strength in a supportive community, a child finally thriving in school. These stories of hope start with YOU. Your support makes it possible to: ?? Empower local organizations with the resources, training, and confidence they need to transform lives. ?? Mobilize patient and family voices to advocate for care and inclusion at every level. ?? Drive lasting change, breaking down barriers to access and creating a ripple effect of healthier communities. ?? Let’s Build a Future Where No Heart is Left Behind Together, we can ensure that Invisible Hearts get the care, attention, and advocacy they deserve. This is your chance to make a lasting impact for families and communities worldwide. ?? Be part of the change. Learn more and join us today: https://bit.ly/3CPE1rA #InvisibleHearts #GlobalARCH #HeartHealth #VisibleChange #COHD #CHD #RHD

#LaterMeansMoreRisk: 65% of children with CHD in Spain aren’t referred for Early Intervention — despite the high risk of neurodevelopmental delays. This recent Heart Month, Fundación Menudos Corazones is raising awareness through a powerful new campaign and video, calling for urgent action to guarantee access to Early Intervention for every child born with CHD. Their message is clear: delays can lead to lifelong consequences. ?? Watch the campaign video: https://bit.ly/4hrP6hn ?? Learn more: https://bit.ly/4j6rkc3 #CHD #HeartMonth #EarlyIntervention #InvisibleHearts #CongenitalHeartDisease #GlobalARCH #LaterMeansMoreRisk

???? Today, on #WorldDownSyndromeDay, we stand in solidarity with people with Down syndrome and their families around the world. Approximately half of all babies born with Down syndrome are also born with congenital heart disease — a key form of childhood-onset heart disease. Early screening, access to care, and lifelong support are essential to ensure every child has the chance to thrive. Let’s work together to raise awareness, advance equity in care, and celebrate the strength and joy of the Down syndrome community. #ImproveOurSupportSystems #DownSyndrome #Trisomy21 #DownSyndromeInternationalNetwork ##WorldDownSyndromeDay #ImproveOurSupportSystems #DownSyndrome #Trisomy21 #Advocacy #DownSyndromeInternationalNetwork ##WDSD2025

Our favorite day of the month—our Global ARCH Leaders Forum! We had an incredible discussion on screening for childhood-onset heart disease—what’s working, where the gaps are, and how patient and family organization leaders can drive real change. ?? From India to Mexico to the U.S., we explored screening programs across the lifespan and what’s needed to ensure early detection leads to action. ?? What’s next? We’re collaborating with clinicians, healthcare systems, industry partners, and policymakers to strengthen support from screening to treatment. Global ARCH is launching an initiative to help patient and family organizations lead the way. Stay tuned! #GlobalARCH #CHD #RHD #HealthEquity #invisibleheartscollectiveaction

?? I am excited to share some highlights from the 4th Global NCD Alliance Forum, Kigali, Rwanda! ?? A month ago, I had the honor of participating in the 4th Global NCD Alliance Forum #NCDAF2025 at the Kigali Convention Center in Rwanda’s capital, Kigali, from February 13-15, 2025, by the invitation of the NCD Alliance. This remarkable event brought together global leaders, health experts, and advocates to tackle critical issues and opportunities surrounding non-communicable diseases (#NCDs) and #GlobalHealth. During this period, I facilitated a session of the pre-conference workshop on "Power-up NCD Advocacy: Connecting and Inspiring Communities for Change" and contributed to the #CivilSociety regional advocacy planning session for the Fourth UN High-Level Meeting on NCDs #UNHLM2025. ? It was also an incredible experience to meet in person the amazing leaders, patient advocates, mentors, and researchers I admire and have been working with for years, drawing inspiration from their dedication and passion. The forum served as a crucial step leading up to the #UNHLM2025 on NCDs, where we will continue advocating for comprehensive, actionable policies that prioritize the health of those most affected by these diseases. Most importantly, we are pushing for investment, health in all policies (#HiAP), integrated approaches, implementation, accountability, and #MeaningfulEngagement of people living with NCDs, mental health, and neurological conditions. As an individual with training and professional affiliations in public health, global health, and patient advocacy, representing Nepal, Asia, and with #LivedExperience of #RHD, it was a valuable opportunity to engage with delegates, exchange critical insights, and strategize on ways to prevent and treat NCDs while collaborating on global solutions. ?? I am optimistic about the outcomes this collaboration will drive in ongoing advocacy. As we move forward, I am committed to continuing to raise awareness, advocate for action, and make meaningful strides in addressing NCDs at all levels, within my capacity. Lastly, a special thanks to all individuals and affiliated organizations for supporting my work, which led to the opportunity to participate in such a meaningful forum. I am also incredibly grateful to NCD Alliance for the travel grant that made my participation possible. ?? NCDI Poverty Network The Helmsley Charitable Trust Global ARCH One Heart Health Global Heart Hub Kathmandu Institute of Child Health Reach World Heart Federation #NCDAF2025 #NCDAllianceForum #NonCommunicableDiseases #CardiovascularHealthForAll #GlobalHealth #PublicHealth #HealthForAll #Leadership #GlobalPartnerships #Intersectionality #IntegratedApproach #UNHighLevelMeeting #PENPlus #VoicesForPENPlus #Nepal #ActOnNCD #TimeToLead

Heart Voices: Stories that Unite Us- Meet Dr. Fenny Shidhika Some careers are planned. Others find you. For Dr. Fenny Shidhika, becoming a pediatric cardiologist in Namibia wasn’t part of the plan—it was fate. She had always dreamed of becoming a cardiologist, inspired by the pioneering work of heart transplant surgeon Dr. Christiaan Barnard. But during her training, her mentor, Professor Bongani Mayosi, encouraged her to work with children with heart disease. ?? “I thought he had made a mistake because I hadn’t trained in pediatrics. But I listened and learned—and it was the best thing that has ever happened to me.” She had found her calling. Now, Dr. Shidhika is leading the charge to improve congenital heart care in Namibia. As the founder of the Namibia National Children’s Health Trust, she’s working to ensure accessible, affordable, and high-quality care for children with heart disease. She helped establish Namibia’s first congenital heart surgery program, so families no longer need to travel to Cape Town for lifesaving operations. “We are on track to achieve our vision. We’ve had great support, but budgets are never enough. That’s why we created the Namibia National Children’s Health Trust—to ensure that no child is left behind.” Her passion is unwavering, even in the face of challenges—from limited resources to navigating complex healthcare systems. ?? As a Global ARCH Medical Advisory Council member, she believes in global collaboration to fight for stronger patient representation, better policies, and improved access to care. ?? Join us in celebrating Dr. Shidhika’s incredible work! Read more here: https://bit.ly/4hdoiB5 #GlobalARCH #CHD #HeartHealth #PediatricCardiology #CongenitalHeartDisease #Advocacy #MedicalLeadership #GlobalHealth

This Saturday (March 8th), we celebrate International Women’s Day and the women who lead, care, and fight for change. From the founders who built our movement to the leaders shaping its future. From the mothers who advocate fiercely to the patients who inspire us with their strength. From the women who build and lead patient and family organizations, creating spaces of support and fighting for change, to the doctors, nurses, clinicians, industry partners, and researchers who go beyond the call of duty to push for better care, life-saving treatments, and policies that give patients a future. Women step in when systems fail. They hold communities together and inspire movements. They push for better care—not just for themselves but for generations to come. Yet, women and girls with childhood-onset heart disease too often face delays in diagnosis, gaps in treatment, and barriers to care. But their leadership and resilience continue to drive change. That’s why we fight for a world where access to care isn’t defined by who you are, and every voice is valued. This fight is too big for any one person, group, or country to take on alone. Real change happens when we come together—when we refuse to leave anyone behind. ?? Who are the women leading change in your life? Tag them in the comments and let’s recognize their impact together. Today and every day, we celebrate the power of women while recognizing the importance of unity in the fight for health equity. #IWD2025 #HeartHealthEquity #WomenLeadingChange #InvisibleHeartsCollectiveAction

This Saturday (March 8th), we celebrate International Women’s Day and the women who lead, care, and fight for change. From the founders who built our movement to the leaders shaping its future. From the mothers who advocate fiercely to the patients who inspire us with their strength. From the women who build and lead patient and family organizations, creating spaces of support and fighting for change, to the doctors, nurses, clinicians, industry partners, and researchers who go beyond the call of duty to push for better care, life-saving treatments, and policies that give patients a future. Women step in when systems fail. They hold communities together and inspire movements. They push for better care—not just for themselves but for generations to come. Yet, women and girls with childhood-onset heart disease too often face delays in diagnosis, gaps in treatment, and barriers to care. But their leadership and resilience continue to drive change. That’s why we fight for a world where access to care isn’t defined by who you are, and every voice is valued. This fight is too big for any one person, group, or country to take on alone. Real change happens when we come together—when we refuse to leave anyone behind. ?? Who are the women leading change in your life? Tag them in the comments and let’s recognize their impact together. Today and every day, we celebrate the power of women while recognizing the importance of unity in the fight for health equity. #IWD2025 #HeartHealthEquity #WomenLeadingChange #InvisibleHeartsCollectiveAction

Today is World Birth Defects Day. Each year, we join organizations like Operation Smile, Saxony-Anhalt Malformation Monitoring Centre, MiracleFeet, and Global ARCH, in raising awareness for the 1 in 33 babies born with a birth defect each year in the U.S., according to the Centers for Disease Control and Prevention. Birth defects (also called congenital conditions or birth differences) include congenital heart defects, cleft lip and cleft palate, club foot and spina bifida. #?? Help us raise awareness by sharing your birth defect story, tagging @marchofdimes. ?? Learn more about birth defects, and get resources during pregnancy on how to help prevent birth defects: https://lnkd.in/eXmv_GS7 #WorldBirthDefectsDay #WBDD #BirthDefects

We are proud to announce a new partnership! Global ARCH is joining Jhpiego, Operation Smile, MiracleFeet, Children's HeartLink, and The G4 Alliance to form the Global Action for Congenital Conditions (GACC). This new coalition will work alongside the WHO to transform how health systems and communities provide treatment and lifelong care for individuals affected by congenital conditions. Through collaboration, we will make a lasting impact in three key areas. ? Collective Advocacy: raise awareness and shape policies ? Implementation & Knowledge Sharing: strengthen care through partnership ? Mobilizing Support & Funding: expand resources for sustainable impact We envision a world where we work together to build stronger, more inclusive health systems worldwide. If your organization is committed to advancing care for congenital conditions, join us in this mission! https://lnkd.in/gsq-PbhE #CongenitalCare #HealthForAll #GlobalAction #GACC #LifelongCare #Collaboration #CHD #birthdefects #WorldBDDay