Rare Global Health Summer Intensive 2025 Highlights
Rare Global Health Summer Intensive 2025 Highlights
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PARTICIPANT TESTIMONIAL:
"Taking the Rare Global Health summer course this year opened my eyes in unexpected ways. Through Google Classroom, I had everything at my fingertips—clear slides and thoughtful assignments made complex topics feel approachable.
The modules on rare diseases were especially impactful. I learned about real-world challenges—diagnosis delays, limited treatment options, and the struggle for global access to care. The assignments weren’t busywork—they helped me truly grasp the issues and think critically about solutions.
This course struck the perfect balance: informative and engaging, yet manageable alongside a summer schedule. It didn’t just teach me facts—it inspired empathy, curiosity, and a desire to continue learning and raising awareness.
In short, it was meaningful, motivating, and personally rewarding."
Pratika Thalluri, 2025
copy_0EBC7E11-E4DB-4E47-92E6-5C7488C26F2C.mov"Behind The Diagnosis: Life With A Rare Disease" by Lamar Youness
"Rare diseases are not as rare as we think they are, every person has a story. Their story must be heard and understood. We must support all patients and doctors. The patients who pray every single night that their pain is cured and that the treatment works (Some don't even have a treatment) must be heard and helped. And, it's not only hard on the patients only but also their families, doctors and loved ones. This video shows how patients suffer, it simply shows what humanity looks like. It shows real life stories and how people feel rare and helpless through their journey, also how they live with rare diseases."
PRESS PLAY TO WATCH FULL VIDEO.
7E363F1C-13D2-40C2-84E6-D9879260CE7B0823_202720 - Mueenat.mp4"Blue Rubber Bleb Nevus Syndrome: Why awareness for rare diseases is important" by Mueenat Ajanaku
"This project is a short video: giving information on Blue Rubber Bleb Nevus Syndrome (BRBNS), which is rare disease. Due to the lack of awareness for Rare diseases, I wanted to highlight BRBNS so that others can under the hardships people with rare diseases go through."
PRESS PLAY TO WATCH FULL VIDEO.
Forgotten Children -The Silent Calamity of Nodding Syndorme.mov"Forgotten Children: The Silent Calamity of Nodding Syndrome" by Barghavan Mohankumar
"A debilitating condition in the neurological disease is ravaging the lives of thousands of kids in some areas of East Africa. Uganda and South Sudan were where Nodding Syndrome was first discovered and it can lead to seizures, learning impairment, growth problems, and, in too many cases, premature death. However, this invisible malady is least known by the world community and underfunded to a hazardous extent. It is a 5-minute short documentary about the human impact of the Nodding Syndrome, our need to learn more, and what actions the health leaders of the world need to take. We can ensure the children and families that are still fighting this silent crisis have a chance to live and experience the joy of life by creating awareness, supporting the frontline healthcare workers, and facilitating international research.
Get into the struggle. Tell somebody about this tale. Act now."
PRESS PLAY TO WATCH FULL VIDEO.
"The Complexity of Ensuring Universal Treatment Provision for Patients with Rare Diseases: A Case Study on the Economic and Healthcare Burden of Treating Myasthenia Gravis (MG) Across Different Health System Models" By Iván Gándara Buján
"One of the XXI century challenges in healthcare systems is the commitment to universal access
and treatment, specially in the cases of rare diseases. Regarding the Myasthenia Gravis (MG)
case, comparison between four health models—Beveridge, Bismarck, national health insurance,
and multi-payer—will be made. Furthermore, policy options include outcomes-based contracts,
joint purchasing, dedicated rare-disease funds, and expanded real-world evidence"
FULL RESEARCH PAPER IS LINKED.
"Engineering the Tumour Microenvironment: Advancing Neuroblastoma Preclinical Models for a Cure" By Mariam Bakradze
"Neuroblastoma is one of the most deadliest cancers in children under five, with its origins still undetermined. This underscores the need for preclinical models that better replicate the tumour microenvironment, as its treatment necessitates a better understanding of cancer behaviour, disease progression and drug response.
This campaign presents a literature review of current solutions, and identifies potential solutions, focusing on in vivo, 2D and 3D in vitro, and 3D bioprinting. It aims to raise awareness about the urgent need to enhance neuroblastoma modelling using 3D bioprinting technology and advanced cell culture methods, to improve drug discovery, personalise therapies, and ultimately reduce paediatric cancer mortality worldwide."
FULL LITERATURE REVIEW IS LINKED.
"Basal Cell Nevus Syndrome (BCNS)" By Fnote Biniam
"This research paper looks at Basal Cell Nevus Syndrome (BCNS). It’s a rare genetic condition that is caused by mutations in the PTCH1 or SUFU genes, which give the body instructions to regulate cell growth. When these genes function poorly, people may develop skin cancers, jaw cysts and other health problems that can appear at a very young age. There is no cure, but treatments like surgery and newer medicines like vismodegib have been made available. The next step for this disease is to have continued research to help find better treatments to optimize care for patients with this long term illness."
FULL RESEARCH PAPER IS LINKED.
"Access to Orphan Drugs: Economic and Ethical Considerations" By Aarana Thana
"The global issue of patients with rare diseases not having equitable access to orphan medications is examined in this project, Access is Equity: Ending the Orphan Drug Divide. Even if laws like the EU Orphan Regulation and the U.S. Orphan Drug Act encouraged innovation, many patients, particularly those in low- and middle-income nations, are unable to afford these treatments due to their exorbitant costs. The study examines the ethical and economic conundrum of orphan drug pricing, identifies inequalities in Europe and around the world, and takes into account the new problem of genomic medicines, all while drawing on five academic sources. The Access is Equity Campaign is an awareness campaign that aims to educate, advocate for, and suggest solutions like outcome-based agreements, rare disease funds, and pooled procurement in order to address these problems. In order to integrate innovation with equality, the project calls for collective action, positioning access to orphan pharmaceuticals as a social justice and health concern."
FULL RESEARCH PAPER IS LINKED.
"Improving Pediatric Medulloblastoma Outcomes in Nigeria: A Policy Proposal for Global Health Equity" By Elizabeth Ogunade
"My policy brief aims to spotlight how Nigeria’s under-resourced system fails children with medulloblastoma, and what can be done to fix it. From missing MRI machines to treatment abandonment rates over 50%, the paper pushes for equity-focused solutions in global pediatric oncology."
FULL POLICY BRIEF IS LINKED.
"Erasing the Invisible: A Global Call to Action on Noma" By Sukhman Kaur
"It is a policy brief highlighting the poverty disease. Noma, which primarily affects children in sub-Saharan Africa, is a disease that affects young children who live in malnourished, unsanitary conditions. This brief focuses on the causes, the ways in which the disease violates sanitation rights, and the health disparities that contribute to its worldwide prevalence. With early detection, dietary initiatives, community education, and committed funding, we can eradicate Noma and safeguard the most susceptible kids."
FULL POLICY BRIEF IS LINKED.
"Policy Brief: Breaking the Stone Prison - Addressing the Global Challenge of Fibrodysplasia Ossificans Progressiva (FOP)" By Shree Garg
"This project explores Fibrodysplasia Ossificans Progressiva (FOP) - a rare genetic disorder where the body mistakenly turns soft tissues into bone. While FOP affects only 1 in a million people, it reveals much larger problems in how we handle rare diseases globally. The policy brief uses FOP as a window into systemic healthcare failures: delayed diagnoses, limited treatment options, and patients who fall through the cracks simply because their conditions are uncommon. By examining how people with FOP navigate a world that progressively locks their bodies in place, we can identify concrete policy solutions that would benefit all 300+ million people living with rare diseases worldwide. Sometimes the rarest conditions teach us the most important lessons about building better healthcare systems for everyone."
FULL POLICY BRIEF IS LINKED.
" 'Importance of the Rare' – Establishing a National Support Foundation for People Living with Rare Diseases" By Daria Gainaru
"“Importance of the Rare” aims to transform the lives of people living with rare diseases both in Moldova and worldwide by establishing a National Support Foundation. The project will provide financial assistance, psychological and palliative care, and run public awareness campaigns to build a compassionate, inclusive, and well-coordinated support network. Through volunteers, digital platforms, and partnerships with government, corporations, and civil society, “Importance of the Rare” seeks to bring visibility, dignity, and hope to a global community that has long been overlooked."
FULL POLICY BRIEF/PROPOSAL IS LINKED.
"Reforming Pediatric Healthcare: A Policy Response to PKU Disparities in Latin America" By Daniya Shahzad
"This policy brief explores the urgent disparities in PKU diagnosis and treatment across Latin America, offering targeted solutions to improve pediatric and multidisciplinary care, access and health equity."
FULL POLICY BRIEF/PROPOSAL IS LINKED.
"Accelerating Diagnosis and Access to Treatment for Rare Diseases" By Abhay Kumar Prashanth
"This project addresses the big need to get diagnosis and treatment to rare diseases which affect over 300 million people worldwide. Despite the collective impact, patients often wait months to get diagnosed and have limited treatment options. The policy brief outlines practical steps to reduce diagnostic delays, raise awareness among healthcare providers and get access to approved and experimental treatments. By highlighting the gaps in the system, the project aims to inform policy makers, advocate for regulatory changes and support initiatives that improve patient outcomes for people living with rare conditions."
FULL POLICY BRIEF/PROPOSAL IS LINKED.
"Rare but Real: Bridging the Global Diagnostic Gap for Rare Diseases" By Treasure Adenusi
"The Rare but Real campaign focuses on addressing the global challenges faced by rare disease patients, particularly the long delays in diagnosis. The project advocates for policy change, increased awareness, and investment in affordable genetic testing. By strengthening healthcare provider training, building rare disease registries, and fostering international collaboration, the campaign aims to improve early diagnosis, reduce unnecessary healthcare costs, and ensure that patients and families gain faster access to life-saving treatments and support."
FULL POLICY BRIEF/PROPOSAL IS LINKED.
"Closing the Treatment Gap for SMA with Cold-Chain UAV Logistics" By Nicholas Saladze
"Spinal Muscular Atrophy (SMA) is a rare genetic disease that requires early treatment with Zolgensma, a gene therapy that must be stored and transported at ultra-low temperatures. In many remote or low-resource regions, patients face life-threatening delays due to a lack of cold-chain infrastructure and reliable transport access.
This project proposes an awareness campaign focused on using drone-based cold-chain delivery systems to bridge that gap. By applying mechanical and aerospace engineering principles, the campaign outlines a 5-step delivery model from a pharmaceutical lab to the patient. The goal is to inform the public and global health stakeholders of how advanced transport technologies can ensure timely, equitable access to rare disease treatments; hopefully saving lives in areas that traditional systems cannot reach."
"Rare Skin, Rare Care" By Nishtha Patel
"This project focuses on Epidermolysis Bullosa which is a rare genetic skin disorder that makes the skin extremely fragile and prone to painful blisters and wounds. My infographic highlights how EB reflects global health inequities in the diagnosis, treatment, and research of rare dermatological diseases. I have included its symptoms and rarity, and the challenges patients face worldwide."
FULL INFOGRAPHIC IS LINKED.
"Combating the high misdiagnosis of other disease in treating Granulamatosis with Polyangiitis (GPA)" By Joleen Tabancay
"In assisting the rare disease community and individuals with granulamatosis with polyangiitis, I identified the main issues faced by those with the disease. I then proposed five possible solutions that could be integrated worldwide."
FULL INFOGRAPHIC IS LINKED.
"Huntington’s Disease (HD) and Mental Health: Building Understanding, Breaking Barriers" By Laiba Ali
"This infographic sheds light on Huntington’s Disease (HD), a rare inherited neurological disorder, emphasizing the stigma and mental health support gaps experienced by patients and their families. The goal of this project is to increase awareness, promote better mental health resources, and combat the social stigma associated with Huntington’s Disease. By combining key information, challenges, and actionable steps in an easy-to-understand visual format, this infographic educates communities, aids caregivers, and encourages policy improvements for mental health care in Huntington’s Disease."
FULL INFOGRAPHIC IS LINKED.
"Spreading Awareness" By Jacklyn Allison Singer
"This project consists of an infographic that informs on the need for more rare disease research."
FULL INFOGRAPHIC IS LINKED.
"Limited Access To Diagnostics And Treatment For Rare Brain Diseases in LMICs" By Alexandra Baker
"This is an infographic addressing the issues relating to diagnosis and treatment for rare brain diseases in low and middle-income countries. This includes some of the barriers, challenges, cases, and possible solutions."
FULL INFOGRAPHIC IS LINKED.
"Rare Disease Diagnosis Delays in Sub-Saharan Africa" By Patience Ninma Philip
"An infographic highlighting the challenges of rare disease diagnosis in Sub-Saharan Africa and proposing solutions including telemedicine, physician training, and resource sharing networks."
FULL INFOGRAPHIC IS LINKED.
"Bridging the Healthcare Gap in Rural Communities" By Bianke von Schlichting
"An infographic of a solution to the lack of healthcare professionals in rural locations as well as the lack of access to information about Rare Diseases."
FULL INFOGRAPHIC IS LINKED.
"Early Diagnosis of PAH" By Shivaathmika Jayapal
"This awareness campaign focuses on Pulmonary Arterial Hypertension (PAH), a rare and progressive disease that causes dangerously high blood pressure in the arteries of the lungs. Although rare, PAH is often misdiagnosed or diagnosed too late, leading to serious complications such as heart failure. The goal of this project is to educate the public and healthcare community about the early signs of PAH, the challenges patients face in getting a timely diagnosis and treatment, and the urgent need for improved care access around the world.
The campaign includes a visual infographic designed to inform people about the symptoms of PAH, why early diagnosis matters, and what can be done to support affected individuals. By spreading awareness, this project aims to reduce diagnostic delays, encourage better screening, and advocate for affordable treatment options for all PAH patients."
FULL INFOGRAPHIC IS LINKED.
"Lost In The System: Diagnostic Odyssey" By Aishshani Rameshkumar
"With the global population having millions of individuals with rare diseases, diagnosis can take years for even countries with advanced technologies and research funding. This wait can delay an individual's right to a healthy future. Additionally, it leads to consequences such as worsening health and financial and emotional stress for both patients and families. It is important as a collective to raise awareness and improve this delay because a year without an answer is a year too many."
FULL INFOGRAPHIC IS LINKED.
"We’re All In This Together: Strengthening Worldwide Management, Awareness and Response to Rare Diseases" By Leonny Tubera
"The infographic shows contrasting sides in rare disease care, mainly by comparing ASEAN management to developed countries' systems. It proposes the establishment of a WHO rare disease department, an interactive learning game, and educational integration."
FULL INFOGRAPHIC IS LINKED.
"Noma Prevention Campaign" By Roohie Patel
"The Noma Prevention Campaign proposes a solution to support countries affected by Noma. This campaign emphasizes the importance of establishing screening centers in affected communities to facilitate early detection and treatment of noma before it progresses rapidly. This proposed solution can contribute to lowering the fatality rate of noma and restore and inform communities regarding the rare disease."
FULL INFOGRAPHIC IS LINKED.
"Diagnostic Delay in Rare Diseases" By Sanjana Guduru
"My project focuses on informing the issue of diagnostic delays in rare diseases and why that needs to change. I've also included possible solutions and call to actions."
FULL INFOGRAPHIC IS LINKED.
"Closing the Gap: A Race Against Time" By Aaditri Singh
"To provide a short description of what a rare disease is and basic information about them. I included quick facts, a brief overview of what it is, struggles with a rare disease, and organizations that help."
FULL INFOGRAPHIC IS LINKED.
"Healthcare Affordability - What about with a Rare Disease?" By Sana Sekar
"My infographic informs viewers on the impact healthcare costs can have on rare disease patients, and encourages them to help fundraise and or advocate for those in the rare disease community."
FULL INFOGRAPHIC IS LINKED.
"The Global Dilemma of Orphan Drugs" By Armaan Jattana
"Over 400 million people globally have rare diseases with 95% of conditions having no approved treatment. Orphan drugs are meant to be helpful, however issues like their exorbitant prices and limited availability leads to this global dilemma."
FULL INFOGRAPHIC IS LINKED.
"Rare Disease Treatment Across Nations" By Satvik Kotyada
"[Shows] how health care is different in other parts of the world, and how each region would deal with a certain rare disease."
FULL INFOGRAPHIC IS LINKED.
"The Weight of An Empty Tomb" By Annie Kuo
"An exploration on the consequences of maternal malnutrition in developing countries, specifically the lack of folic acid in an expectant mother's diet and its impact on the infant. I focused on the mechanisms of neural tube defects specifically related to encephalocele."
FULL INFOGRAPHIC IS LINKED.
"Kawasaki Disease" By Anisah Brown
"An ICD-10 coding and historical background on kawasaki Disease including a visual awareness infographic covering definition, symptoms, causes, diagnosis, treatment. A cartoon-style image makes the topic accessible, especially if the audience includes non-clinicians or young students."
FULL INFOGRAPHIC IS LINKED.
"Orphan Drug Gap: Drug & Medicine Access to Rare Disease Treatment" By Asis Tung
"Orphan Drugs: Drugs that are designed to cure rare diseases that do not affect large numbers of patients. Case Study on SMA Rare Disease."
FULL INFOGRAPHIC IS LINKED.
"Global Health Issue: HIV/AIDs" By Laisha Shaik
"This is an infographic that informs the reader of the damage that HIV/AIDS can have. It has impacted regions economically and will continue to if medicine is not available to the public. "
FULL INFOGRAPHIC IS LINKED.
"Bridging the Gaps in Rare Disease Healthcare with Data" By Sriharshita Volety
"My project examines how data silos, isolated collections of information, pose a major barrier to rare disease awareness and research, and how creating a global, interoperable database could overcome this challenge by improving diagnosis, advancing treatment development, and expanding knowledge."
FULL INFOGRAPHIC IS LINKED.
"TIME IS RUNNING OUT : THE RACE FOR TREATING THE UNKNOWN" By Aarya Karmakar
"This infographic outlines some fast facts on rare diseases, research disparities on the global scale for treatment research, and the dire urgency of expanding accessibility of solutions where it is needed most."
"Hidden Struggles: Mental Health in Rare Disease" By Sara Purbhe
"The issue selected focuses on the mental health crisis for patients with a rare disease and their caregivers. Patients with a rare disease also feel isolated or disconnected from society and experience uncertainty about the future. Some have the continuous weight of worry regarding costs related to their treatment or the absence of support systems (community or family support). Caregivers (in particular, parents of children with rare diseases) also carry an emotional burden. Mental health is rarely the central discussion point when discussing the care for patients with rare diseases."
FULL INFOGRAPHIC IS LINKED.
Undiagnosed infographic.pdf"Road to Diagnosis" by Christine McGarvey
"Road to Diagnosis" by Christine McGarvey
"Guidelines for health care professionals to diagnosis undiagnosed patients."
"Limited Access to Sickle Cell Disease" By Shriyans Nomula
"This project is meant to inform students about Sickle Cell Disease a blood disease prevalent in Africa with it affecting 8 million people worldwide. It informs them what it is, treatments for it, why it is hard to access, and possible ways they can support the treatment of this disease."
FULL INFOGRAPHIC IS LINKED.
"Stronger Together: Collaborating for Mental Health" By Charmy Brahmbhatt
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