Youth for Rare Minds Winter Program 2026
Youth for Rare Minds Winter Program 2026
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PARTICIPANT TESTIMONIAL:
"Participating in this program has been an incredibly enriching and transformative experience. I have long held a deep interest in rare diseases and psychology, but I had never before been given such a meaningful opportunity to explore these fields with such depth, structure, and guidance. The program not only broadened my academic understanding but also allowed me to engage critically with real world perspectives, which made the learning process even more impactful.
One of the most valuable aspects of this experience was the opportunity to connect theoretical knowledge with human stories, helping me better appreciate the complexities faced by patients and caregivers. It strengthened not only my intellectual curiosity but also my empathy and sense of responsibility toward these fields.
I sincerely thank the organizers for creating such a well-structured and impactful initiative. It has left a lasting impression on me, and I will carry the lessons and inspiration from this experience forward."
Mohammad Ashfaqul Islam Neebeer, 2026
FINAL PROJECT GALLERY!
"Mandatory Mental Health Integration in Rare Disease Treatment Plans: A National Policy Imperative" by Zeynep Rüya Özdemir
"'Rare disease patients face profound psychological challenges; including lengthy diagnostic delays, social isolation, and the emotional weight of conditions that are often lifelong and progressive. Despite this, mental health support is rarely included in rare disease treatment plans. Where it exists, access depends on individual clinicians, geography, or a patient's own
ability to ask for it. This brief argues that national healthcare policies must mandate the inclusion of mental health services as a standard, non-optional component of all rare disease care. Making psychological support automatic, rather than exceptional, would transform outcomes, reduce long-term healthcare costs, and represent a genuine shift toward treating the whole person."
FULL POLICY BRIEF IS LINKED.
"Rare Minds in Schools: From IEPs to Inclusion" by Kamrul Hassan
"'Rare Minds in Schools: From IEPs to Inclusion' is a comprehensive policy proposal and awareness campaign designed to address the mental health gap in education for students with rare diseases. While schools often address physical barriers, they frequently overlook the psychological impact of medical trauma and isolation.
This project proposes "The Whole Student Amendment"—a policy mandate to include specific psychosocial accommodations in IEPs, such as re-entry protocols for hospitalizations and trauma-informed curriculum alerts. This policy work is paired with "Rare Reality Week," a student-led awareness initiative featuring the "Zebra in the Room" infographic to destigmatize invisible illness among peers. This submission advocates for a systemic shift from simple academic compliance to holistic, community-based inclusion."
FULL POLICY BRIEF IS LINKED.
"Bridging the Gap: Integrating Mental Health into Rare Disease Care Systems" by Rihanna Rajkumar
"People with rare diseases face not only complex physical health challenges but also significant mental health burdens, including anxiety, depression and social isolation. Despite this, mental health support is often fragmented or absent with rare disease care systems.
This policy brief proposes nationwide implementation of integrated one-stop coordinated car systems in the United States, where mental health services are embedded into rare disease treatment pathways. By aligning healthcare delivery, policy and advocacy, this approach both clinical outcomes and the quality of life of patients and families."
FULL POLICY BRIEF IS LINKED.
"Breaking the Silence " by Shresta Kodhaty
"A Policy Brief on Isolation and Lack of Peer Support Among People Living with Rare Diseases"
FULL POLICY BRIEF IS LINKED.
"Addressing Unmet Mental Health Needs in Rare Disease Care in India" by Suhani Chaudhary
"Rare diseases pose a significant and often hidden challenge to the Indian healthcare system. While each disease affects a few, collectively they impact an estimated 70 to 92 million people in India. A critical, yet overlooked, aspect of their journey is the immense mental health burden."
FULL POLICY BRIEF IS LINKED.
"Mental Health Integration in Rare Disease Care: A Policy Brief" by Shlok Bharati
"Mental health support is nearly absent from rare disease care, and this policy brief proposes five system-level changes to make psychological services a standard, built-in part of treatment rather than an afterthought."
FULL POLICY BRIEF IS LINKED.
"Advocacy and Resilience: Bridging the Mental Health Gap for Rare Disease Communities" by Mohammad Ashfaqul Islam Neebeer
"This literature review synthesises on the course objectives regarding mental health advocacy, the unique psychosocial burdens of living with a rare disease, and the systemic changes required to improve patient outcomes."
FULL LITERATURE REVIEW IS LINKED.
“Seen, Heard, Supported: A Mental Health Crisis in Rare Disease Care - Informing, Advocating, and Proposing Integrated Solutions” by Abdul Basit Zargar
"This policy brief informs the urgent mental health crisis affecting 30 million people with rare diseases (82.4% experience frequent emotional distress; only 30% receive services). It advocates for systematic change through a four-level implementation framework addressing clinical practice, healthcare system design, professional training, and policy reform. The document proposes evidence-based solutions including mandatory mental health screening protocols, integrated care models (Collaborative Care Model and Co-Located Care), healthcare provider education requirements, and insurance coverage reform. With a 12-month implementation roadmap and measurable success metrics, this document transforms the rare disease care paradigm from fragmented service delivery to integrated, person-centered mental health care as standard practice."
“Bridging the Invisible Gap: Integrating Mental Health into Rare Disease Care” by Mridini Sur
"This proposal advocates for a systemic shift in rare disease management by mandating Integrated Care Pathways (ICPs). By hard-coding mental health screening and psychosocial support into standard clinical protocols, we can bridge the critical gap between physical treatment and emotional wellbeing. The project identifies the "budget silo" as a primary barrier to holistic care and proposes "Bundled Payment" models to ensure mental health services are a requirement, not an optional extra. Ultimately, this policy seeks to transform the "diagnostic odyssey" from a period of isolation into a supported, multidisciplinary journey that empowers patients and their families."
FULL POLICY BRIEF IS LINKED.
“Social support groups in Chile” by Desiree Vazquez
"Talks about the challenges and the importance of creating social support group groups for people with rare diseases"
FULL INFOGRAPHIC IS LINKED.
“Preventive Mental Health Care for Rare Disease Patients” by Sanjana Kola
"Many patients with rare diseases experience isolation, anxiety, and emotional stress, yet mental health support is often provided only after symptoms have become severe. This infographic highlights the need to integrate preventive mental health care into rare disease treatment through early screening, accessible counseling, and provider training. By promoting proactive support, it emphasizes a more holistic healthcare approach where mental health is treated as an essential part of patient care."
YRMS Project Submission - Ishani Mazumder - Isha.mp4"Mental Health and the Rare Disease Experience" by Ishani Mazumder
"This project is a short awareness video that explores the mental health challenges faced by individuals living with rare diseases."
PRESS PLAY TO WATCH FULL VIDEO.
"Mental Health Challenges Faced by Rare Disease Patients and Caregivers" by Kalpita Gangwar
"An infographic sharing the 4 most common mental health challenges faced by rare disease patients and caregivers, along with brief reasoning."
"Mental Health Challenges in Rare Disease" by Preetham Srikanth
"This project explores both the mental and physical burden of living with a rare disease. It shows the impact of mental health and how to identify it. With those various factors, it gives various solutions for people with mental health issues who have a rare disease. Finally, it also gives a call to action section where people can take action to bring awareness to this conflict. "
FULL INFOGRAPHIC IS LINKED.
"Rare, but not alone" by Samar Habli
"Advocating for better healthcare systems in Canada"
"Mental Health & Diagnostic Delays" by Roohie Patel
"The Mental Health and Diagnostic Delays campaign highlights the mental health effects that people living with rare diseases face due to the delay in diagnosing their condition. This campaign proposes implementing diagnostic journey support programs to reduce this negative impact. This program can help those with a rare disease navigate their mental health and remain supported throughout their long journey."
“The Hidden Mental Health Crisis in Rare Disease Patients” by ishani raghunathan
"I created an infographic focusing on the specific mental health concerns of rare disease patients. This is something that I am especially interested in and passionate about as a psychology and neuroscience student."
“The Heart Behind the Care” by Leonny Andrielyn P. Tubera
"My campaign focus on the mental health of rare disease caregivers. There are initiatives that emphasize visibility, storytelling, and practical support. These actions can help address the often-overlooked mental health challenges of caregivers."
“Mental Health for Patients with Rare Diseases” by Gabriela Segura
"What are rare diseases, and how many people do they impact? While they have existed for a while, there remains a gap between treatment for patients with rare diseases, advocacy, and mental health. Through advocating for the integration of mental health professionals in hospitals, this problem can be solved."
FULL INFOGRAPHIC IS LINKED.
“Seen beyond symptoms ” by Tayiba Binte Mudabbir
"This project, "Seen Beyond the Symptoms: Mental Health in Rare Disease Care", is a campaign that shines a light on the health struggles of people with rare diseases. These individuals often face challenges that are ignored. Medical care usually focuses on symptoms, but this campaign says mental health is just as important and often neglected. The project uses infographics to explore three areas: What it's like to live with a disease. The gaps in healthcare systems. Practical solutions for improvement. It shows how people with rare diseases often feel uncertain, isolated and emotionally hurt because of long diagnosis journeys and lack of understanding from society. It also looks at how healthcare systems fail to include mental health support in treatment, leaving many to cope alone. The campaign suggests changes, such as: 1. Checking health in routine care 2. Making policies that focus on mental well-being 3. Strengthening advocacy groups in raising awareness and supporting patients By combining stories with global views, this project aims to promote a more caring approach to healthcare. Ultimately this campaign wants to change the idea that rare diseases only affect the body. It advocates for a system where mental health's a key part of treatment and recovery for rare diseases. The project "Seen Beyond the Symptoms: Mental Health in Rare Disease Care" wants to make mental health a priority in disease care. It seeks to make healthcare more holistic and compassionate."
FULL INFOGRAPHIC IS LINKED.
“Beyond the Diagnosis: A Campaign for Integrated Mental Health in Rare Disease Care” by Bratick Bhowmick
"Individuals living with rare diseases face a unique set of stressors, including the "diagnostic odyssey," profound social isolation, and medical uncertainty. Despite evidence linking these stressors to high rates of anxiety and depression, mental health care remains fragmented from physical treatment. This paper reviews current literature regarding the psychosocial impact of rare diseases and proposes a targeted awareness and policy campaign titled "Whole Person, One Place." This campaign advocates for the mandatory integration of mental health professionals into Multidisciplinary Teams (MDTs) within Rare Disease Centers of Excellence, targeting hospital administrators, insurance payers, and accrediting bodies."
FULL LITERATURE REVIEW IS LINKED.
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