We've curated a list of resources and support for your condition.
The Maddi Foundation was originally started as ‘Save Our Maddi Appeal’ in 2016 when teenager ‘Madeleine Thurgood’ was diagnosed with a life limiting genetic disease called Hereditary Spastic Paraplegia 15 (SPG15). Maddi’s mum and Co-Founder, Carina Thurgood began pushing the necessity of raising awareness of SPG15, to advance research and developement of a Gene Therapy for this rare disease.
Jo's Cervical Cancer Trust is the UK’s leading cervical cancer charity. We provide trustworthy information and support to everyone that needs us, and campaign for the best in cervical cancer prevention, diagnosis, treatment and care. Our vision is of a day where cervical cancer is a thing of the past.
Since Fabry disease is a rare genetic disorder, and since there are thousands of rare diseases, it’s hard for individual patients and caregivers to be heard. Therefore, when striving for better care and cure for Fabry patients, we need them to join forces and speak out. That’s where FIN comes in: an independent and vibrant network of Fabry patient associations whose purpose is to collaborate, communicate and promote best practice to support those affected by Fabry disease. We back 60 patient organizations in 57 countries. We connect health professionals and we ally with industry partners. We envision a world where every single person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment and cure. Our mission, therefore, is to empower Fabry patients all over the world. FIN is a non-profit organisation registered in The Netherlands. The administrative support is based in Belgium. The Board of Directors meet regularly either online or face-to-face. In addition, they hold regular meetings with the industry partners and medical advisors.
We are the only national charity in the UK focused on finding a cure for all types of brain tumours through campaigning to increase the national investment in brain tumour research to £35 million per year, while fundraising to create a network of seven sustainable Brain Tumour Research Centres of Excellence across the UK.