Youth Research Program

Youth Research Program: Empowering Young Voices in Science

RareGen’s Youth Research Program bridges the gap between young individuals living with rare diseases and the cutting-edge scientific research needed to improve their lives. This program is a unique initiative that positions youth as key contributors to medical advancements, offering them opportunities to collaborate with researchers, share their lived experiences, and help shape the future of rare disease treatments.

Key Objectives of the Program

Amplify Youth Perspectives in Research

Integrate the lived experiences of young individuals with rare diseases into medical research to ensure treatments and therapies address real-world challenges.

Foster Collaborative Innovation

Build meaningful partnerships between youth, researchers, and medical institutions to promote patient-centered research.

Encourage Youth Participation in Science

Inspire young people affected by rare diseases to pursue careers in research and healthcare, turning their challenges into a driving force for innovation.

Partnerships with Medical Institutions

RareGen has cultivated strong collaborations with leading medical institutions, researchers, and advocacy organizations worldwide. These partnerships are the backbone of the Youth Research Program, ensuring that youth voices are not just heard but acted upon.

Key Collaborators

Children’s Liver Foundation (India)

RareGen chapters give young advocates a sense of purpose and belonging, allowing them to make a tangible difference.

NORD (National Organization for Rare Disorders)

Members join a global community of passionate peers, building friendships and networks that last a lifetime.

Global Genes

RareGen supports efforts to connect researchers with young rare disease patients to facilitate participatory research models.

What These Partnerships Achieve

Youth members are invited to participate in research design, ensuring studies are aligned with patient realities.

RareGen acts as a bridge between researchers and the rare disease community, promoting trust, transparency, and inclusivity in research efforts.

RareGen hosts collaborative workshops and forums where youth share their experiences with clinicians and researchers to inspire patient-centered approaches.

Results and Updates on Current Research Projects

Integration of Youth Insights into Rare Disease Studies

RareGen recently collaborated with a team of hepatologists on a study addressing post-transplant challenges in pediatric liver disease patients. Youth members provided firsthand accounts of their experiences, which shaped the study’s focus on mental health support, medication adherence, and quality-of-life measures. The results were presented at an international conference, receiving widespread recognition for their innovative approach.

Genetic Research in Rare Diseases

In partnership with a genomic research institute, RareGen connected young patients with researchers to investigate under-diagnosed rare conditions. Youth involvement led to the identification of previously unreported symptoms, which expanded the diagnostic criteria for a rare genetic disorder. This project is ongoing and expected to inform future diagnostic tools.

Youth-Led Surveys for Clinical Trials

RareGen facilitated a groundbreaking survey where youth with rare diseases were asked to rank treatment priorities (e.g., symptom management, ease of administration, cost accessibility). These findings have been adopted by a pharmaceutical company to guide the development of a patient-friendly clinical trial design.

Advancements in Mental Health Research

RareGen partnered with mental health specialists to study the psychological impact of living with a rare disease. Youth insights directly influenced the development of a new therapy model aimed at reducing feelings of isolation and enhancing coping mechanisms. Early results show significant improvements in participant well-being.

Looking Ahead: The Future of the Program

RareGen’s Youth Research Program is poised to expand further by:

Establishing more partnerships with global medical institutions to include diverse perspectives.
Developing mentorship programs to encourage youth participation in research fields.
Launching an online platform where youth can share experiences and ideas with researchers in real time.

Why This Program Matters

Rare diseases are often misunderstood, and research can sometimes fail to capture the full scope of patient needs. RareGen’s Youth Research Program addresses this gap by giving young patients an active role in shaping the studies that impact their lives. Through this initiative, youth are no longer passive subjects of research but empowered collaborators driving meaningful progress.

The results speak for themselves: groundbreaking research informed by real experiences, more inclusive clinical trials, and a new generation of advocates inspired to lead in the fields of science and medicine. RareGen’s Youth Research Program is proof that when young voices are included, innovation flourishes, and lives change for the better.