March 2023 – YOHRA is Founded

A group of passionate young advocates, researchers, and healthcare professionals come together to establish Youth Organization for Health & Rare Advocacy (YOHRA). The vision: Empower young voices to lead meaningful change in awareness, support, and innovation for rare disease communities worldwide.

YOHRA sets its foundation with four key focus areas:

• Youth Empowerment – Training and supporting young advocates in rare disease policy and digital advocacy.
• Digital Innovation – Exploring technology-driven solutions such as AI, telemedicine, and data sharing to improve rare disease care.
• Global Community Building – Establishing a network spanning Asia-Pacific, Europe, and North America to bring together rare disease advocates.
• Evidence-Based Advocacy – Promoting policies backed by research and data to ensure rare disease patients receive the attention and support they deserve.

YOHRA launches its first digital awareness campaign on social media to highlight diagnostic delays and challenges in rare disease communities. The campaign reaches 50,000+ people globally, engaging youth advocates, researchers, and healthcare professionals.

YOHRA partners with global rare disease organizations, including advocacy groups, researchers, and medical institutions. The organization hosts its first virtual webinar on youth-led digital health solutions for rare disease care, drawing over 300 participants from 20+ countries.

YOHRA releases its first policy research paper, titled: "Leveraging Digital Health Solutions to Shorten Diagnostic Delays for Rare Diseases". The paper is distributed to policymakers, healthcare professionals, and advocacy groups worldwide, sparking discussions on AI-driven diagnostics and telemedicine access.

YOHRA grows its global presence, with youth representatives now active in 25+ countries. Partnerships are established with leading rare disease organizations, universities, and digital health startups to collaborate on AI and data-driven rare disease advocacy.

YOHRA debuts the Insight Hub, a platform dedicated to: Publishing policy insights on rare disease innovation; Sharing youth-led research on digital health solutions; Hosting discussions between rare disease stakeholders.