Find a collection of global health success stories.

Original title: “Our Success Stories”

General information about leptospirosis, including symptoms, treatment, prevention, and resources.

Original title: “About Leptospirosis”

Rare Disease Day 2026: Many Voices, One Global Movement Since 2015, the aHUS Alliance Global Action team has been right there alongside patients and caregivers—creating resources, sharing knowledge, and putting a spotlight on the issues that matter most to families navigating life with atypical ... Rare Disease Day 2026: Many Voices, One Global Movement Since 2015, the aHUS Alliance Global Action team has been right there alongside patients and caregivers—creating resources, sharing knowledge, and putting a spotlight on the issues that matter most to families navigating life with atypical hemolytic uremic syndrome (aHUS). Here’s the honest truth: for years, a small handful of dedicated volunteers have carried much of the weight of aHUS advocacy. They’ve given generously—their time, their creativity, their energy. And we’re deeply grateful for this international group of people, who are aHUS patients and family caregivers themselves. But the work is bigger than any one person or small group, and it’s vital to keep growing with new ideas and innovative efforts in order to meet aHUS challenges. To mark world Rare Disease Day 2026 we’ll break from our usual video project and try something new. This year, we’re inviting everyone—patients, caregivers, healthcare professionals, researchers, and supporters around the world—to step forward with your own projects and perspectives. Advocacy doesn’t require a camera, a stage, or a spotlight. Rare disease advocacy is not centered on personal storytelling – instead, it transforms our experiences into shared understanding, helping others recognize common challenges and the strength it takes to live with a rare condition. Launched in 2008 by EURORDIS, Rare Disease Day has grown into a truly global movement—one fueled by collaboration, compassion, and shared purpose. The aHUS Alliance is an informal umbrella group connecting aHUS advocates and patient organizations across more than 30 nations. Recognized as a charitable non-profit (legal registration No. 1167904), the aHUS Alliance Global Action team supports collective advocacy by creating articles, graphics, and educational materials that highlight key issues within the atypical HUS community.

Original title: “Rare Disease Day 2026: Many Voices, One Global Movement - aHUS Alliance Action”

Raising awareness and celebrating the lives of children with Schaaf-Yang Syndrome on Rare Disease Day. Celebrate Rare with us with our Rare Disease Day Toolkit. Discover simple ways to: ✅ Raise awareness ✅ Share your story ✅ Make an impact · Together, we inspire hope, amplify voices, and work toward a future where every individual—regardless of diagnosis—is recognized for the extraordinary qualities that make them uniquely beautiful. ... Nicci has been dedicated to community-building and advocacy work for years, even before the birth of her son, Will, in 2020. With February 28 marking Rare Disease Day, we honor the courage, joy, and resilience of families living with Schaaf-Yang Syndrome (SYS). The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3). Foundation for Prader-Willi Research Phone: 888-322-5487 Email: [email protected]

Original title: “Celebrating Rare Disease Day: Spotlight on Two Inspiring Families”

Annual state report card highlights progress and persistent gaps in access to care for 30 million Americans WASHINGTON, D.C., Feb. 9, 2026 — Access to care for Americans living with rare diseases … Continue reading "National Organization for Rare Disorders Ranks All 50 States on Rare Disease Policies"

Original title: “National Organization for Rare Disorders Ranks All 50 States on Rare Disease Policies”

This webinar will explore the current rare disease clinical development landscape and the key trends shaping its future. ... The webinar will highlight three major forces redefining how rare disease studies are designed and executed. First, the featured speakers will examine the rise of customizable platform trials and how adaptable trials can accelerate timelines while maintaining scientific rigor. Second, panelists will explore emerging technologies in rare disease therapeutics... This webinar will explore the current rare disease clinical development landscape and the key trends shaping its future. ... The webinar will highlight three major forces redefining how rare disease studies are designed and executed. First, the featured speakers will examine the rise of customizable platform trials and how adaptable trials can accelerate timelines while maintaining scientific rigor. Second, panelists will explore emerging technologies in rare disease therapeutics, including the growing role of ex vivo clinical trials and practical insights from cell therapy studies initiated with effective study start-up and patient recruitment strategies. In this free webinar, learn how to align innovative science with global regulatory expectations to successfully advance rare disease clinical development and... Join a Medpace rare disease expert as they explore key trends shaping the future of rare disease clinical development, including customizable platform trials, new technologies for rare diseases and new global regulatory laws to ensure a study is prepared and aligned with regulatory requirements. Learn how to align innovative science with global regulatory expectations to successfully advance rare disease clinical development and programs to drive meaningful change for patients. Join experts from Medpace, Ann Woolfrey, MD, Vice President, Medical Department; Tanya Konovalenko, MPharm, RAC, Director, Regulatory Affairs; and Jackie Widmer, Director, Clinical Trial Management, for the live webinar on Friday, February 27, 2026, at 10:30am EST (4:30pm CET/EU-Central).

Original title: “3 Key Trends Transforming the Future of Rare Disease Clinical Development, Upcoming Webinar Hosted by Xtalks”

Recognising the achievements of this year's standout healthcare collaborations

Original title: “EHP Awards triumph”

Read stories from health departments funded by CDC's Overdose Data to Action cooperative agreement.

Original title: “Overdose Data to Action Stories”

BackgroundRare diseases (RDs) pose a significant public health concern, particularly in Poland, where awareness among healthcare professionals, educators, an... In participants’ accounts, such initiatives were intended to reach audiences not typically engaged through health-focused advocacy alone. We participate in scientific conferences at universities and other organisations (…) where we have already spoken several times about the syndrome and the problems faced by people with rare diseases. We also participate in the activities of the [name] social movement, which brings together associations and foundations for rare diseases. Rare diseases (RDs) pose a significant public health concern, particularly in Poland, where awareness among healthcare professionals, educators, and the general public remains low. Rare disease patient advocacy groups (RDPAGs), often led by caregivers, play a vital yet under recognized role in addressing these gaps through informal education and advocacy. In this context, rare disease patient advocacy groups (RDPAGs) represent a prominent site where educational and awareness-raising practices are articulated and enacted in response to perceived systemic knowledge gaps. Perhaps it is because we have this practical knowledge, and in the case of rare diseases, this knowledge is just as valuable as the theoretical knowledge we can find in scientific papers. So this attitude has certainly changed; we are treated as partners. (S2) Participants portrayed RDPAGs as occupying intermediary positions between families, clinicians, and policymakers. They described advocacy activities aimed at translating scientific knowledge into practical guidance for healthcare providers and patients, with the stated goal of improving recognition and understanding of RDs within the medical system.

Original title: “Frontiers | “We are ambassadors, we are advocates”: rare disease patient advocacy groups as knowledge brokers across health and social systems—a qualitative study from Poland”

Rare Disease Day is only the beginning. Learn why early diagnosis, quality genomic data, and advocacy must work together—and how GeneDx helps drive action for rare disease. By responsibly aggregating genomic and clinical data at scale, GeneDx Infinity could help researchers, clinicians, and advocacy groups identify patterns, refine disease understanding, and uncover insights that would not be visible from isolated cases alone. patterns, refine disease understanding, and uncover insights that would not be visible from isolated cases alone. ... Every test contributes to a growing data foundation that supports clinical decision-making today while advancing discovery for the future. When individual diagnoses are connected within a broader data ecosystem, insights gained from one patient could help inform care, research priorities, and advocacy strategies for many others. Rare Disease Day is a global movement that brings together patients, caregivers, healthcare providers, advocacy organizations, and industry partners to elevate the needs of people living with rare conditions. At GeneDx, we are bringing diagnosis, data, and advocacy together to drive meaningful change for people affected by rare disease. le affected by rare disease. Progress does not happen in isolation. A diagnosis provides answers for an individual patient, but those answers reach their full potential only when supported by high-quality data and paired with advocacy that drives action. Rare Disease Day is an opportunity to take action that helps shorten the path to answers and improve outcomes across the rare disease community. Your story is one of the most powerful tools for driving change. Advocacy begins when real-world data is paired with patient and caregiver experiences to extend reach and impact.

Original title: “Rare Disease Day: Moving Beyond Awareness for Rare Disease Patients and Providers - GeneDx®”

What content do HCPs value most for their patient care?

Original title: “Guesswork to guidance”

I experienced symptoms from a very young age, but they went unnoticed for a long time. In adulthood, they intensified, along with comorbidities, and with… Continue reading Putting a Name to the Invisible Even though a diagnosis does not cure the disease, it is a crucial step toward acceptance and better well-being. Speaking about it helps shed light on rare diseases, and allows others to recognize themselves, feel less alone, and find a community that understands and supports them.

Original title: “Putting a Name to the Invisible - Rare Disease Day 2026”

Rare Diseases Clinical Research Network’s Coalition of Patient Advocacy Groups (RDCRN-CPAG) The Children’s Inn at NIH · EveryLife Foundation for Rare Diseases ·

Original title: “Rare Disease Day at NIH | National Center for Advancing Translational Sciences”

This observance, celebrated on the <strong>last day of February each year</strong>, highlights the importance of research and the development of new treatments for rare diseases, which often lack the attention and resources more common conditions receive.

Original title: “Rare Disease Day: How Patient Advocacy Groups Impact Research”

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policymakers, public authorities, industry representatives, researchers, health professionals, and anyone who has a genuine interest in rare diseases. ... Global Genes is a leading rare disease advocacy ...

Original title: “Patient Advocacy - NTSAD”

Angela is the Founder and President ... disease patients in California. Cal Rare started the California Rare Disease Legislative Caucus that now includes 25% of the State Legislature. In 2018, Angela was the recipient of the Rare Voice Award for State Advocacy from the Rare Disease Legislative Advocates. In 2019, she was named a Top 100 Social Media Advocate for Rare Disease and in 2020, a Top 50 Rare Disease Awareness Advocate by the International Pain Foundation...

Original title: “Rare Disease Week - EveryLife Foundation for Rare Diseases”

Dengue is common in many countries globally. Travelers are at risk when visiting these areas.

Original title: “Areas with Risk of Dengue”

Join us for Rare Disease Day 2026 as we raise awareness for Phelan-McDermid syndrome and share ways families can help make rare visible. On February 28, 2026, we invite you to join the Phelan-McDermid Syndrome Foundation (PMSF) and the global rare disease community in raising awareness for Phelan-McDermid syndrome and the millions of individuals living with rare diseases. Add our Rare Disease Day social media profile frame to show your support, spark conversations, and help make rare visible. Share Phelan-McDermid Syndrome Foundation Resources Help spread accurate information by sharing trusted resources from the Phelan-McDermid Syndrome Foundation. ... Watch for and share Rare Disease Day graphics and facts across your social channels. Every year on the last day of February, the global rare disease community comes together to raise awareness, share stories, and advocate for patients navigating through life with a rare disease.

Original title: “Rare Disease Day 2026: Raising Awareness for Phelan-McDermid Syndrome - Phelan-McDermid Syndrome Foundation”

Help us raise the call for greater equity for people living with rare conditions. Join myaware & Genetic Alliance UK on 28 Feb 2026 to call for equity for 3.5 million people with rare diseases. Help raise awareness and share support online.

Original title: “Rare Disease Day 2026: Equity for Rare Conditions”

/PRNewswire/ -- Returning patient data in clinical trials is becoming recognized as an essential component of patient-centric research. In rare disease... TORONTO, Feb. 5, 2026 /PRNewswire/ -- Returning patient data in clinical trials is becoming recognized as an essential component of patient-centric research. In rare disease studies, it is particularly important. Patients with rare diseases often have limited access to information about their own health and the progression of their condition. Register for this webinar to learn how sponsors can implement responsible patient data return practices in rare disease clinical trials. Join experts from Premier Research, Angi Robinson, Senior Vice President, Specialty Areas; and Victoria Watts, Vice President, Compliance Officer, for the live webinar on Thursday, February 26, 2026, at 11am EST (5pm CET/EU-Central). For more information, or to register for this event, visit Responsible Data Return in Rare Disease Clinical Trials: What Sponsors Need to Know. In this free webinar, learn about the importance of returning patient data to rare disease clinical trial participants. Attendees will gain insight into the regulatory expectations and ethical considerations for returning patient data. The featured speakers will share operational strategies conducive to responsible data return in rare disease clinical trials.

Original title: “Responsible Data Return in Rare Disease Clinical Trials: What Sponsors Need to Know, Upcoming Webinar Hosted by Xtalks”