Rarity Life issue 13 is here! Rarity Life is full of articles, stories, real life experiences and images by people who live with, and have experience of #raredisease, #disability and #cancer, created for anyone with an interest in these communities.

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:. #RarityLife #DyingMatters #WhatMattersMost #DyingtobeHeard #goodgrief

We love researching different destinations for our regular accessible travel feature, to read all about the beautiful island of Crete visit #RarityLife magazine here:. #travel #DisabilityTravel #AccessibleAdventures #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:. #WhatWereInto #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:. #ShareYourRare #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 @AnneRobsonTrust. Read more in #RarityLife magazine here:. #NoOneDiesAlone #DyingMatters #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: . #ThyroidCancer #rarecancers #raredisease #NationalLottery

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

We loved chatting to Janneke, you can read her story in 'A Life Shaded by Pain' in #RarityLife magazine here: . #ChronicInflammatoryDemyelinatingPolyneuropathy #CIDP #RareDisorder #AutoimmuneDisease #RareDisease #NationalLottery. X: @gbscidp

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:. #cerebralpalsy #disability #adaptivesports #NationalLottery

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

In ‘The Importance of Connection’ Nancy Di Salvo, the Director of International Affairs for @gbscidp 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.

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: #LungCancer

“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.

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.

We are so excited to share that Rarity Life issue 13 is now LIVE online!. As always this edition is full of articles, stories, real life experiences and images by people who live with, and have experience of #raredisease, #disability and #cancer. View at:

Read about Linseigh’s incredible rare disease journey in her self-authored piece ‘This Year I’ve Decided not to Shrink,’ in #RarityLife magazine:. #NECsurvivor #FNDAwareness #disability #inclusionmatters . @NECUK_Charity @NECsociety @FNDHope @FNDAction

Instead of a #thursdaythrowback post we're sharing a @BPA_Porphyria flyer in support of Porphyria Awareness Day on the 18th of May 2025. We're working on a feature about porphyria for #RarityLife magazine - for now find our previous editions here:.

Sianna was diagnosed with cancer at 5 years old, you can see her #style feature & more in #RarityLife magazine here: #RARETALES #SleepingBeauty #Fashion #Style #Childhoodcancer #shareyourstory #raredisease #cancer #inclusionmatters #nationallottery

Catherine Bouvier is the Co-Founder and CEO of the charity @ncukcharity, read Empowering & Supporting the Neuroendocrine Cancer Community in #RarityLife to find out all about her work:. #NeuroendocrineCancer #NETCancer #NETRF #NETs #NECs #NationalLottery