Mary’s husband Mike had lived with dementia for years and over that time their world gradually became smaller. Read more of their story in our online exhibition: samebutdifferentcic.org.uk/whatmattersmost Exhibition created w. @HospiceUK & @MarieCurieUK & supported by #NationalLottery

"Grief is difficult for adults, so imagine how much more challenging it can be for children." Grief is something we don’t talk about enough, & because of this we often find ourselves at a loss when trying to support someone who is grieving. Read more in rarity-life.com

Rarity Life’s special feature of the SMA European conference 2024 features an interview with one of Cure SMA Foundation of India’s founders, Alpana. Her story is a must-read. Share this with those who need to see it! rarity-life.com SMA-Europe

“I've given a bit of positivity to him, and hopefully to others.” Loz’s interview in our latest edition of Rarity Life takes readers through the full range of emotions he has felt over the years living with Chronic Myeloid Leukaemia. Read his story: rarity-life.com

“Each individual is entitled to define their purpose and beauty.” Lucja’s confidence and winning personality shine through in her Rarity Life ‘On Uniqueness’ feature. Tell us a commonplace beauty standard you want to kick to the kerb; comment below! rarity-life.com

Barbara lives with MS, how it has affected her life has led her to think about her death, & what she can do to help others living with the condition. Visit #WhatMattersMost: samebutdifferentcic.org.uk/whatmattersmost Exhibition created w. @HospiceUK & @MarieCurieUK, supported by #NationalLottery

“I needed to believe that when your life has become a cage, you can loosen the bars & reclaim your freedom.” In our regular ‘What We’re Into’ reviews we share our thoughts on the incredible book ‘Between Two Kingdoms, What Almost Dying Taught Me About Living’ by Suleika Jaouad.

Have you seen this documentary film? To read more about why we chose to watch and review Netflix’s beautiful ‘American Symphony’, read our regular ‘What We’re Into’ reviews feature in #RarityLife magazine: rarity-life.com #AmericanSymphony #JoinTheSymphony jon batiste

“Whether you end up going on a well-deserved day trip or on a longer trip home or abroad, we wish you happy holidaying.” Join us on a tour across the UK as we take a look at some brilliant, and accessible, summer day trip hotspots! rarity-life.com

Cecilia's mum lived life to the full & wanted her death to be like her life, deciding that the quality of her life mattered more than the length of time she had left. Visit our 'What Matters Most' Exhibition here: samebutdifferentcic.org.uk/whatmattersmost Thanks to @HospiceUK & Marie Curie

Jenny Whitman, CEO of the @moebiussyndrome, eloquently discusses how she came into her current role, the impact the foundation is having, & her hopes for the future. You can read Jenny’s interview in our latest edition of #RarityLife rarity-life.com #inclusionmatters

Are you rare-ing to share? We want to know about your experiences living with/loving someone with a rare disease, disability or cancer. To see some of the stories we've already shared visit #RarityLife: samebutdifferentcic.org.uk/raritylife Contact us at [email protected]

Mo is measuring her life day by day ,hoping for just one more season to enjoy. You can read more here: samebutdifferentcic.org.uk/whatmattersmost Heartfelt thanks to those who took part & in memory of those who are sadly no longer with us. Exhibition created with @HospiceUK & @MarieCurieUK

We're excited to see Tully Kearney MBE PLY take to the water this morning at the Paris 2024 Paralympics! We loved having the opportunity to interview & photograph Tully for Issue 2 of #RarityLife magazine: rarity-life.com #paralympics #CerebralPalsy #dystonia #NationalLottery

From the best apps & free online resources through to online personal trainers, our adaptive fitness research has shown us that no matter where you are in your fitness and life, exercise can be for everyone with the right adaptations. To read more visit: rarity-life.com

Do you enjoy writing? And sharing your story? We love having the opportunity to include contributed features in each edition of #RarityLife magazine & are looking for submissions for our upcoming issues. To see previous editions visit our website here: rarity-life.com

Listen to our Creative Director, Ceridwen, on BBC Radio Wales as she joined Jon Antoniazzi from Marie Curie to speak about end of life care and share her distressing personal experiences with end-of-life care during her mum Joan’s final days: bbc.co.uk/sounds/play/m0… at 1:07:50

Our Creative Director, Ceridwen, recently shared her family’s emotional journey with the BBC. She opened up about the challenging times they faced during her mum Joan’s final days & the lack of support they experienced in end-of-life care. Read more here: bbc.co.uk/news/articles/…

Marie Curie UK has released a new report on End of Life Care in the UK. The findings are concerning, with 1 in 8 families filing formal complaints and half of those surveyed expressing dissatisfaction with the support received. Read here: mariecurie.org.uk/policy/better-…

Dan, a retired GP feels that acknowledging no one person is alike is key to helping to achieve a good death. You can read more by visiting our 'What Matters Most' exhibition here: samebutdifferentcic.org.uk/whatmattersmost With thanks to Marie Curie Hospice UK & #NationalLottery.