We love our regular ‘5 Questions with’ feature, such a great way to learn about the inspiring people from our communities. Dr Sally Stringer, Director of Same but Different Creative talks about what drives her:
samebutdifferentcic.org.uk/raritylife

#RarityLife #raredisease #nationallottery

#ThrowbackThursday & we're revisiting our first issue of #RarityLife in which we spoke to Henry Fraser about his life, art & award winning books:

samebutdifferentcic.org.uk/raritylife

Henry's 4th exhibition is on the 14 & 15 Sept at the Grove Hotel Watford, pop the dates in your diary!

Dimitar's story is interwoven with Megan’s (who we featured last week), he took part in #WhatMattersmost to talk about learning to live with his partner’s #terminalcancer diagnosis:

samebutdifferentcic.org.uk/whatmattersmost
#DyingMatters #cancer #NationalLottery

Marie Curie Hospice UK

As part of our new ‘Meet the Professional series we spoke to an occupational therapist with 20+ yrs experience to find out more about the profession:

samebutdifferentcic.org.uk/raritylife

#RarityLife #raredisease #cancer #disablity #Occupationaltherapy #nationallottery

Royal College of Occupational Therapists WFOT

Today is #GouldSyndromeAwarenessDay (largely referred to as #COL4A1 & #COL4A2 in the UK/Europe)

In 5 of #RarityLife magazine we spoke to Dr Doug Gould about his groundbreaking research & heard 8 yr old Eddie's story:

samebutdifferentcic.org.uk/raritylife

#raredisease #nationallottery

“How can you lose the love of your life, but gain the greatest love you can ever know?” Louise Blyth

To read our latest book review in the regular ‘What We’re Into' feature visit #RarityLife below:

samebutdifferentcic.org.uk/raritylife

#cancer #grief #nationallottery

Louise

Katja has Moebius syndrome that causes facial paralysis but she's not let it hold her back. Her story's in #RarityLife samebutdifferentcic.org.uk/raritylife
#moebiussyndrome #facialpalsy #FPAW2024 #UniqueSmiles #facialpalsy support #facialparalysissupport #fashion #nationallottery #Disability

We have shared Megan's story in both #RarityLife magazine & as part of our #WhatMattersMost project, you can visit the exhibition here to hear more:
samebutdifferentcic.org.uk/whatmattersmost
#DyingMatters #Grief #GoodGrief #endoflife #PalliativeCare Marie Curie Hospice UK

Have a child with a rare condition? You might have to learn a whole new language, see our guide here
samebutdifferentcic.org.uk/raritylife
#raredisease #disabledvoices #specialneeds #learningdisability #languagematters #acronyms #abbreviations #medicaljargon #inclusionmatters #nationallottery

Rhys lives with Superficial Siderosis a rare neurological condition he says that he would be lost without his parents' support as he is unable to work
samebutdifferentcic.org.uk/costofliving
#costofliving #costofliving help #energycost #risingcosts #nationallottery Rhys Holmes SSRA | Living with SS

It's hard to know what to give to someone who has recently been diagnosed with, or is currently undergoing treatment for cancer, so we’ve curated a list of some of our favourite ideas in #RarityLife :

samebutdifferentcic.org.uk/raritylife
#cancer #cancer awareness #cancer sucks #nationallottery

Katja’s first person account about her experiences of living with #moebiussyndrome and #facialpalsy is written with real openness & honesty, find it here:

samebutdifferentcic.org.uk/raritylife

#RarityLife #raredisease #moebiussyndrome #nationallotteryRead

MoebiusSyndromeFdn Facial Palsy UK

Head over to #RarityLife to plan your next trip to a beautiful, sunny city that offers everything you need in a break, Valencia!

samebutdifferentcic.org.uk/raritylife

#raredisease #cancer #disabilty #accessibletravel #citybreaks #nationallottery

Visit València Spain Love Valencia Spain

“I didn’t understand what was happening, or what our future might look like”

Read more in #RarityLife magazine where Sarah, founder of @peeps-HIE writes movingly about their rare disease journey & how this led them to found a charity:

samebutdifferentcic.org.uk/raritylife

#nationallottery

With the Easter weekend upon us we wanted to wish you all a happy, healthy &relaxing long weekend.

But it can be a tricky time financially, especially with the ongoing #CostofLiving crisis. For info on support visit:

samebutdifferentcic.org.uk/costofliving

#costofliving #nationallottery

“We have a lot of work still ahead of us but it’s just a really, really promising time”

Read more in our interview with Charlene Son, CEO of Global Genes & founding board member of stxbp1 in #RarityLife magazine:

samebutdifferentcic.org.uk/raritylife

#raredisease #nationallottery

When artist Luke Adam Hawker's son was born life was of course forever changed. In ‘Growing as a Person Through Love’ he shares his family’s #raredisease journey with us. Visit #RarityLife to read more:

samebutdifferentcic.org.uk/raritylife

#KlinefelterSyndrome #thelasttree #nationallottery

It's purple day today, the annual epilepsy awareness day!

So we're resharing our #RarelyHeard podcast series, created in collaboration with Beacon for Rare Diseases, featuring the founders of MedCan Family Foundation, listen here:

samebutdifferentcic.org.uk/podcasts

#raredisease #Epilepsy #nationallottery

Does your child need adaptive shoes? In 'Stepping in Style’ we include our top recommendations, plus the fab team at #Friendlyshoes have given our readers an exclusive discount code:

samebutdifferentcic.org.uk/raritylife

#RarityLife #adaptiveshoes #adaptivefashion #nationallottery

In our feature ‘SMAdvocacy The Journey Towards Advocacy and Hope’ Véronique shares her story with us. You can read more here:

samebutdifferentcic.org.uk/raritylife

#RarityLife #raredisease #SMA #SpinalMuscularAtrophy #disabledvoices #inclusionmatters #nationallottery

SMA-Europe