Rare Disease Community is a comprehensive online platform dedicated to providing support, information, and resources for individuals affected by rare diseases, their families, and healthcare professionals. It serves as a hub for connecting people, sharing experiences, and accessing the latest research and treatment options in the field of rare diseases.
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2015
English, etc
Website Key Features
Discussion Forums
A space for members to share their experiences, ask questions, and offer support to one another.
Resource Library
A collection of articles, research papers, and guides on various rare diseases and their management.
Expert Q&A
Opportunities to ask questions and receive answers from medical professionals and researchers specializing in rare diseases.
Event Calendar
Information on upcoming webinars, conferences, and meetings related to rare diseases.
Personal Stories
Inspirational and educational stories from individuals and families navigating the challenges of rare diseases.
Treatment Finder
A tool to help users find information on treatments and clinical trials for specific rare diseases.
Support Groups
Directory of local and online support groups for various rare diseases.
Additional information
Mission
To empower the rare disease community by providing accessible information, fostering connections, and advocating for research and treatment advancements.
Vision
A world where no one feels alone in their rare disease journey and where advancements in treatment and care are accessible to all.
Community Impact
Over 50,000 members worldwide, with active participation in advocacy, research funding, and awareness campaigns.
Partnerships
Collaborates with leading rare disease organizations, research institutions, and pharmaceutical companies to enhance support and resources for the community.
Awards
Recognized with several awards for innovation in digital health and community support.
HTTP headers
Security headers report is a very important part of user data protection. Learn more about http headers for rarediseasecommunity.org