
COVID-19, Co-production and a very Rare year.
At the end of January this year, my daughter Hannah and I boarded a train to London…
Read moreAt the end of January this year, my daughter Hannah and I boarded a train to London…
Read moreThis week Lucinda, mother to Nola, highlights her journey to diagnosis…
Read moreI cross many Borders, as a person who happens to have a rare disease…
Read moreI remember vividly the moment when a passenger got on the bus…
Read moreWhat ails you darling child? Mum would say to me…
Read more2017: I once worked at a place where it became a requirement to wear gloves…
Read moreI can barely type right now. I literally got the energy to type…
Read moreThis week changemaker Mel speaks to Jess Doyle from Metabolic Support UK…
Read moreLike many disabled people, I’m no stranger to poor access and bad attitudes towards disability…
Read moreThis week changemaker Jack is carrying out an ‘Ask me anything’ style Instagram Q+A…
Read moreLife can be unpredictable, a lesson we have all learnt the hard way…
Read moreThis week changemakers Rachel and Lara caught up to discuss their…
Read moreThis week, changemakers Lara and Rachel met to continue their conversation…
Read moreThis week Chloe, mother to Ronnie, talks about her experience of…
Read moreThis week changemaker Karen speaks with Laura Szutowicz CEO of HAE UK, about living with the HAE…
Read moreThis week, changemaker Zainab has documented her daily routine in a video diary…
Read moreThis week changemaker David speaks with Lucy, CEO of Medics For Rare Diseases about what it is like…
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This campaign isn’t just about us – it’s about you. If you live with, or care for someone with a rare disease, share your experience on social media using the hashtag. Help us be heard.
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