Cambridge Rare Disease Network is a platform for change. It is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience, the journey towards better diagnosis, treatment and support for patients and their families is smoother and more certain. We are a network improving rare lives by supporting families, educating and inspiring stakeholders to take action and promoting collaboration.
CheckRare is a learning platform for health care professionals and patients. Our platform allows users to gain insight and learn about rare diseases, current and emerging therapies, clinical trials, and the BioPharma companies behind them. Our peer-to-peer content is a trusted source for education and industry-related content. Our native content and sponsored programs are developed through our website, e-newsletter, social media platforms, and live meetings. We are a trusted, strategic partner with all major organizations in the global network of rare disease advisors and advocates.
EURACTIV is an online independent media network specialized in EU policies, founded in 1999. We are the go-to newspaper for news in EU policies. Our headquarter is in Brussels, but we have 12 other offices in 12 different European countries. Through this European Network we provide free localised EU policy news in 12 languages. We are recognized for our independence, multilingualism, and unbiased journalism. Visit our website www.euractiv.com
FibroFlutters are a support and advice support network with a special ‘RARE’ focus on Ehlers-Danlos Syndromes, CHRONIC focus on Hypermobility Spectrum Disorders, fibromyalgia, arthritis, other Musculoskeletal, and Undiagnosed conditions.
One of our founding members has ULTRA RARE disease ‘Pigmented Villondular Synovitis’
On Rare Disease Day we will launch a support avenue for this via our new Rare Disease Arm – Zebra Strutters.
We are a patient, health, clinical research, medical, pharma, digital health and AI advocacy organisation with a social media network for connecting multi-stakeholders from across the medical and healthcare industries and for sharing relevant information / news.
Rare Disease UK, a campaign run by the charity Genetic Alliance UK, is the official organiser of Rare Disease Day in the UK. Rare Disease UK is the national campaign for people with rare diseases and all who support them. We provide a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK and we seek to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases.