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We are delighted to announce that Same but Different have secured funding to build on the work of our pilot project ‘What matters most?’. 'Dying to be Heard’ will seek to implement impactful discussions and provide essential support to communities. rarity-life.com

“Do it. Follow your dreams. Think about what makes you Happy, what inspires you and LET GO!!” Read ‘Follow your Dreams: An introduction to the Artist Charlie French’ to find out more about Charlie and the motivation behind his beautiful artwork. rarity-life.com

Read ‘Lung Cancer can Affect Anyone’ by Rachel Avery, the Director of Communications and Engagement at the Roy Castle Lung Cancer Foundation to find out more about their mission to raise vital awareness of this disease. You can find it here: rarity-life.com #LungCancer

In ‘The Importance of Connection’ Nancy Di Salvo, the Director of International Affairs for GBS|CIDP Foundation describes how the experiences the founder Estelle & her husband Robert had when he was diagnosed with a rare disease motivated her to start the foundation. rarity-life.com

In ‘The Transformative Possibilities of Gene-silencing medications’ we speak with Liz Gill and Sue Burrell, Co-CEOs of the British Porphyria Association (BPA) to find out more about their work, see more in #RarityLife magazine: rarity-life.com #PorphyriaTogether #NationalLottery

We love our regular ‘5 Questions With' feature, visit #RarityLife to find out about Jason's journey to becoming an Adaptive CrossFit Athlete & Assistant Adaptive Coach: rarity-life.com #cerebralpalsy #disability #adaptivesports #NationalLottery

We loved chatting to Janneke, you can read her story in 'A Life Shaded by Pain' in #RarityLife magazine here: rarity-life.com #ChronicInflammatoryDemyelinatingPolyneuropathy #CIDP #RareDisorder #AutoimmuneDisease #RareDisease #NationalLottery X: GBS|CIDP Foundation

In her brilliant self-authored piece Renee Wheels Travels describes the impact that her world travels have had on her, a true voyage of discovery. Read more in #RarityLife: rarity-life.com #freewheelchairmission #wheelstravel #AccessibleTravel #NationalLottery

Sometimes our most difficult challenges change not only us but also the world. Read ‘The Shape of a Butterfly’ in #RarityLife where Kate shares the story behind the Butterfly Thyroid Cancer Trust: rarity-life.com #ThyroidCancer #rarecancers #raredisease #NationalLottery

In ‘Meet the Professional’ we talk to Janet about her Butterfly Volunteer role at her local hospital, who run the scheme in partnership with the Anne Robson Trust. Read more in #RarityLife magazine here: rarity-life.com #NoOneDiesAlone #DyingMatters #NationalLottery

If you are feeling overwhelmed as we head into the second half of the working week why not read ‘Tiny Joys: Finding small moments of happiness (or hygge moments’ in #RarityLife magazine for more of our top tips here: rarity-life.com #ShareYourRare #NationalLottery

Having seen many posts on different SEN related social media platforms about the film ‘Out of My Mind’ we knew we had to watch it! To read our review in #RarityLife magazine click on the link below: rarity-life.com #WhatWereInto #NationalLottery

We love researching different destinations for our regular accessible travel feature, to read all about the beautiful island of Crete visit #RarityLife magazine here: rarity-life.com #travel #DisabilityTravel #AccessibleAdventures #nationallottery

Delighted that we've secured funding to build on the work of our pilot project ‘What matters most.’ To read more about ‘Dying to be Heard’ visit #RarityLife magazine here: rarity-life.com #RarityLife #DyingMatters #WhatMattersMost #DyingtobeHeard #goodgrief

In The Importance of Connection in #RarityLife Nancy Di Salvo, Director of International Affairs for GBS|CIDP Foundation talks about the importance of advocacy: rarity-life.com #GBS #CIDP #RareDisorders #AutoimmuneDisease #RareDisease #NationalLottery

As the holidays begin for many families the use of technology will be an absolute life saver - so it's the perfect time then to read ‘Bits & Bytes: Growing up in today's Technological Age’ in #RarityLife: rarity-life.com #raredisease #inclusionmatters #nationallottery

In A Life Shaded by Pain Janneke talks with real honesty about living with a rare, often hidden, disease. Visit #RarityLife magazine to find out more: rarity-life.com #CIDP #GBS #RareDisorder #AutoimmuneDisease #RareDisease #NationalLottery GBS|CIDP Foundation

What to Do When I'm Gone: A Mother's Wisdom to Her Daughter, written by Suzy Hopkins & illustrated by her daughter, Hallie Bateman. Read our review of this beautiful little book in #RarityLife magazine here: rarity-life.com #WhatWereInto #BookReviews #Grief #Goodgrief

For our #ThrowbackThursday post we're pleased to be highlighting the story shared with us by Rhys for our #DaysofRare Project, as his story is truly one worth telling: samebutdifferentcic.org.uk/daysofrare With thanks to Rhys Holmes #TBT #RareDisease #superficialsiderosis #NationalLottery