Rarity Life Magazine

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Rarity Life Magazine

Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Rarity Life Magazine, Magazine, .

Rarity Life is a brand new online publication that offers those affected by rare disease, disability and cancer the opportunity to create content that is truly inclusive, to unify our collective experience and to celebrate and share our differences.

12/10/2023

Our latest issue of is live - have you read it yet? If not, head over to Same but Different to find out more as this page is no longer active.

is created by the team over at Same but Different. To find out more about the work they do, and for regular posts about we highly recommend a follow on all their social media platforms as that is where all things will be shared.

16/05/2023

Our latest issue of was launched today - we are so excited to share it with you all!

is created by the team over at Same but Different. To find out more about the work they do, and for regular posts about we highly recommend a follow on all their social media platforms as that is where all things will be shared. This page is no longer actively monitored.

Same but Different

20/02/2023

Our latest issue of will be launching soon, we are so excited to share it.

is created by the team over at Same but Different. To find out more about the work they do, and for regular posts about we highly recommend a follow on all their social media platforms as that is where all things will be shared.

Same but Different

29/12/2022

Rarity Life is created by the team over at Same but Different. To find out more about the work they do, and for regular posts about we highly recommend a follow on all their social media platforms!

15/12/2022

Rarity Life is created by the team over at Same but Different. To find out more about the work they do, and for regular posts about we highly recommend a follow on all their social media platforms!

08/12/2022

Rarity Life is created by the team over at Same but Different. To find out more about the work they do, and for regular posts about we highly recommend a follow over at Same but Different

07/12/2022

Rarity Life issue 4 is here! We are delighted to share our latest edition featuring a wealth of articles, stories, real life experiences and images by people who live with, and have experience of , and , created for anyone with an interest in these communities. You can see more here:

https://www.samebutdifferentcic.org.uk/raritylife

05/12/2022

Rarity Life issue 4 is almost here! We are excited to share our newest edition with you this week…. Keep your eyes peeled, or better still subscribe now so you will be the first to know once we launch on the 7th! Our next edition is packed with articles, stories, real life experiences and images by people who live with, and have experience of , and , created for anyone with an interest in these communities. You can see more here:
https://www.samebutdifferentcic.org.uk/raritylife
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24/11/2022

We are delighted to share that we will be at tomorrow and Saturday, and we'd love to see you!

is taking place at the Cambridge Guildhall on Friday 25 Nov and Saturday 26 Nov, and you can still get FREE tickets here: https://bit.ly/3uFhKWu

You can find us in the main exhibition hall, where we will be sharing images from our exhibition, and of course you'll also be able to find out more about .

23/11/2022

Each scene in our project was created around the individual and their condition, and the styles, colours and fabrics of the clothing chosen, as well as the different elements which relate to the rare disease were carefully chosen and curated to encourage curiosity. These beautiful styles are also featured in our latest issue of which you can visit here:

https://www.samebutdifferentcic.org.uk/raritylife

21/11/2022

Vienna has a whole array of things to do and see. A truly beautiful city steeped in history and culture. The choice of accessible hotels means there is somewhere for everyone to choose from; from the ultra-modern to historic buildings. Read our guide in for our top choices:
https://www.samebutdifferentcic.org.uk/raritylife

Handiscover
Karin Viennatouristboard
Steigenberger Hotels and Resorts
SO/ VIENNA
MOOONS

18/11/2022

In our Health & Wellbeing feature in Issue 3 of we have focused on the benefits and joy that even simple gardening can bring. To read more handy tips, including suggestions for a range of tools follow the link below: https://www.samebutdifferentcic.org.uk/raritylife

Healthcare Pro
Rhs Home

17/11/2022

“My top tip is, if you are going to do anything in life, do something you are passionate about it will drive you forward!”
Fiona followed her passion after being diagnosed with M.E. and struggling with Spinal stenosis and grief. Her love of all things vintage has driven her change of career with Bettylicious and keeps inspiring her daily. It has given her the opportunity to meet inspiring people along the way, a part of her work that Fiona really loves.
To find out more follow the link: https://www.samebutdifferentcic.org.uk/raritylife

BettyLiciousUK
Scope

16/11/2022

“We are not the disease or patient group expert. We are drug development experts in rare disease.”

EspeRare was at the very forefront of pioneering a new model of collaborative working within the framework of rare diseases, developing infrastructures that span a breadth of interested parties. By initially working with the patient organisations EspeRare identify the treatment they will seek to develop, based on the therapeutic potential that they can potentially bring to the rare disease community. To find out more about the ground breaking work that they do follow the link: https://www.samebutdifferentcic.org.uk/raritylife

15/11/2022

“I have a checklist that I tick off whilst I plan a holiday, and I add to it after each holiday. I suppose I treat myself like a business and look at best practice - what went well, and how I can improve.”
Amanda and Jay are proud parents to two beautiful children, eleven-year-old Jamie and nine-year-old Jessica. Jessica has a rare genetic condition, STXBP1 and lives with complex epilepsy, limited mobility and learning difficulties. More recently Jamie has been diagnosed with long covid and is fighting hard to become well again. But the Hartley family don’t let their challenges stop them from exploring the world, so we asked Amanda how she plans their trips, and she explained that for her planning each trip is a constantly evolving process. To read more follow the link below:
https://www.samebutdifferentcic.org.uk/raritylife

Lewis EpilepsyAction
UK Infantile Spasms Trust- UKIST
Genetic Alliance UK

14/11/2022

“Within my group, no one seemed to acknowledge my disability. This was something I’d always welcomed, and found emboldening. My friends often told me they forgot I was disabled, which I took as a compliment… (but) my disability was part of who I was.”

In her brilliant and unflinchingly honest book Sophie Morgan writes about her journey towards claiming her place in the world, and her right to be happy as a strong, independent, wild, fearless disabled woman who is entitled to be seen, to be heard, and to have her needs met. To find out more follow the link below:

https://www.samebutdifferentcic.org.uk/raritylife

Sophie Morgan
Little, Brown Book Group

11/11/2022

“He opened the box and said ‘Daddy, look what I have, it is like a sword. See what I can do!’
The day Ben received his cane to help him navigate the outside world was a difficult one for Ben’s parents and yet, as with everything else in his life, Ben took it in his stride and found joy in it. His father said that at that moment ‘I was like wow, he's showing us how to behave and how we should not think about the negatives but to be proud and appreciate it. It was the same with his hearing aid and so many other situations.’ To read more about Bernd and his incredible son Ben follow the link: https://www.samebutdifferentcic.org.uk/raritylife

Ben's Art
Alström Syndrome UK
Alström Angels
Initiative Alström
Genetic Alliance UK

10/11/2022

“I thought it must happen for my child, I will fight for it.”
Chris and Hengameh are determined to try to help their daughter, who has Cornelia de Lange Syndrome, and it is this hope which is the driving force behind their charity, Hope for Hasti. They are both passionate about not only helping their daughter, but about helping the many children who have and will still be diagnosed with CdLS. To read more about the amazing way that the family are working towards this follow the link below: https://www.samebutdifferentcic.org.uk/raritylife

HopeforHasti

09/11/2022

“It’s really hard to have to chase for something you don’t even want.”
Sam tries to enjoy her life and live it to the fullest, despite her CMMRD diagnosis. Sam has to live with the knowledge that she has a high risk of developing certain cancers and finds the experience of having to repeatedly follow up with the hospital for the results that might change everything emotionally draining. To read about Sam’s story follow the link here: https://www.samebutdifferentcic.org.uk/raritylife

Maggie's Centres
Macmillan Cancer Support
Lynch Syndrome UK - Northampton Open Contact Group
Lynch Syndrome International
Lynch Syndrome Awareness
Sam Rose - writersam

08/11/2022

“I decided to spend my life doing what I love and not making myself unnecessarily stretched. After you've been through something so traumatic, and life-changing it does make you re-evaluate what's important.”
Olivia Goddard is 21 years old, and lives in Surrey with her family, Mum Clare, Dad Scott and brother Zac. Scott, Olivia and Zac all have hereditary NF2, and although NF2 is very much a part of the fabric of their everyday lives as a family they are positive about the future, they work on enjoying life, and being present in the now. To find out more about Olivia follow the link:
https://www.samebutdifferentcic.org.uk/raritylife

NF2 BioSolutions UK & Europe NF2 BioSolutions Genetic Alliance UK The Brain Tumour Charity

04/11/2022

As a Wales-based organisation Same but Different welcomes the Welsh Rare Disease Implementation Plan which was released in June 2022. It aims to improve rare disease awareness, diagnosis and health care for patients over the next four years. Working with the Senedd, the NHS, rare disease groups and with patients the WRDIP is about making the diagnosis of, and care for rare diseases a priority.

To find out more follow the link:

https://www.samebutdifferentcic.org.uk/raritylife

02/11/2022

In Issue 3 of we featured our brand new, innovative and immersive online Days of Rare exhibition. To read more:

https://www.samebutdifferentcic.org.uk/raritylife

31/10/2022

We built a ‘Rare room’ in our studio and each scene was created around the individual and their condition. If you look carefully, included within the images, are different elements which relate to the rare disease, carefully chosen and curated to encourage curiosity”

You can read more about our project in our latest edition of :
https://www.samebutdifferentcic.org.uk/raritylife

28/10/2022

The Skies We’re Under is a podcast by and for parents of people with complex disabilities created by Rachel Wright and hosted in partnership with her regular guests Lucy Parr and Sarah Clayton.

Often in the rare disease world, or as the parents of disabled children, our experiences are so different to those of our friends and family that it is easy to feel alone, to feel isolated. To be able to listen to others talking about lives that we can not only imagine but are also living is hugely powerful. A must listen!

To find out more follow the link:

https://www.samebutdifferentcic.org.uk/raritylife

Born at the Right Time
Simple Stuff Works Associates Ltd

25/10/2022

RAREfest22 is an award-winning festival that is as UNIQUE as the people it champions. On Friday 25th November the festival launches with an evening of music, dance and talks by the rare community. On Saturday 26th November the doors open for a day-long festival featuring interactive talks, activities, demos and exhibits, film and art showcasing innovative science, visionary technology and pioneering organisations improving lives and bringing hope to those living with rare conditions.

For the experts. For the curious. For all ages. For the whole family. For everyone. For FREE.

To find out more follow the link: https://www.samebutdifferentcic.org.uk/raritylife

#

Cambridge Rare Disease Network

24/10/2022

Vienna - “The world’s most livable city” is also one of Europe’s most accessible destinations. Offering scenic rooms to stay in and great public transport systems it’s sure to be a trip to remember. The city is steeped in history, with beautiful architecture, a rich and varied culture and coffee houses galore, it is quite simply a place that needs to be on your travel list. Read about our top picks in here:

https://www.samebutdifferentcic.org.uk/raritylife

Handiscover

21/10/2022

“I also want to offer support to other people like me, as many I have met can’t do a standard job due to health conditions. It will be called Betty’s Business Basics.”
Because of her own health issues, Fiona knows the importance of support and getting help if needed and is acutely aware that there are many people with health issues who are unable to work a 9-5 job. Fiona wants to help others and so she is planning a new venture to help people to develop and realise their own business ideas.
To find out more follow the link: https://www.samebutdifferentcic.org.uk/raritylife

BettyLiciousUK
Scope

20/10/2022

“Within a week of finding out the results I was in hospital having surgery to get it (the tumour) removed, there could have been many life-changing threats with that operation because it was in the centre of my head, surrounding my spinal cord. It's amazing that I am the way I am now because my life could have been so different after the operation”
In our third edition of we spoke to 21-year-old Olivia who lives with Neurofibromatosis type 2 (NF2) about her life, her experiences and her new role as the Youth Ambassador for NF2 Bio Solutions. To find out more follow the link: https://www.samebutdifferentcic.org.uk/raritylife

NF2 BioSolutions UK & Europe NF2 BioSolutions Genetic Alliance UK The Brain Tumour Charity

19/10/2022

‘Take active steps to maintain emotional wellbeing on a daily basis.’

As a parent carer life can often feel overwhelming, and the many and varied challenges that arise mean that all too often parent carers are forced to neglect their own needs. When coupled with social care and public healthcare systems that have both been cut to breaking point, resulting in increased caring burdens for many families, it is more crucial than ever that we look after and try to maintain our own mental health. This brilliant book is one tool that you can use to do just that, to find out more follow the link below:

https://www.samebutdifferentcic.org.uk/raritylife

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Our latest issue of #RarityLife is live - have you read it yet? If not, head over to Same but Different to find out more as this page is no longer active. #RarityLife is created by the team over at Same but Different. To find out more about the work they do, and for regular posts about #RarityLife we highly recommend a follow on all their social media platforms as that is where all things #RarityLife will be shared. #RarityLife #Samebutdifferent #ShareYourStory #raredisease #cancer #disability #inclusionmatters #NationalLottery

Rarity Life issue 4 is here! We are delighted to share our latest edition featuring a wealth 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. You can see more here: https://www.samebutdifferentcic.org.uk/raritylife #RarityLife #shareyourstory #raredisease #cancer #disabledvoices #inclusionmatters #nationallottery

Rarity Life issue 3 is here! We are delighted to share our latest edition featuring a wealth 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. You can see more here: https://www.samebutdifferentcic.org.uk/raritylife #RarityLife #shareyourstory #raredisease #cancer #disablity #inclusionmatters #nationallottery

“When I started swimming I just absolutely fell in love with it. I realised that in the water I wasn’t at a disadvantage, and it was much easier for me to move.” Find out more about the incredible force of nature that is Tully Kearney MBE. Follow the link below where you can listen to our podcast interview, read the article and see the images captured for our swimwear style feature: https://www.samebutdifferentcic.org.uk/raritylife #RarityLife #CerebralPalsy #dystonia #paralympics #paralymicswimmer #nationallotterycommunityfund Tully Kearney BettyLiciousUK Cerebral Palsy Sport Dystonia UK

‘Often the full ramifications of cancer treatment don't come until towards the end of the treatment’ Follow the link below to listen to our Rarity Life Heard podcast episode with Dame Laura Lee, the CEO of Maggie’s. In this episode Laura offers a true insight into the realities of living with cancer beyond treatment, and the ways in which the teams at the different Maggie’s centres around the country support and empower those living with cancer. https://www.samebutdifferentcic.org.uk/raritylife #Raritylife #Maggiescentres #cancer #cancercare #YouCareWeCare #NationalLotteryCommunityfund Maggie's Centres The National Lottery Community Fund/ Cronfa Gymunedol y Loteri Genedlaethol Steve Morgan Foundation

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