Living with a rare disease can be an isolating experience. RareConnect was created byEURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.
UnderstandLearn what it's like to live with a rare disease or share your own story. Browse patient testimonies, share photos, and contact patient organizations. The “Understand” section of RareConnect promotes awareness and understanding through daily life experiences.
MeetStart your global conversation here. Connect with others around the world to share support and encouragement. The “Meet” section of RareConnect provides a safe place to meet friends, ask questions, start or join conversations, and interact with others experiencing the same challenges.
LearnFind quality information from trusted sources. Read publications from medical experts and patient organizations. The “Learn” section of RareConnect links to FAQs, published articles, upcoming events, and other documents providing the latest information for each disease-specific community.
Remember....Research is the key to your cure!Join this wonderful community for free today! If you have questions please contact Amy Chapman on FB American Porphyria Foundation.