RARE Round-up - keeping you up-to-date 29th November 2024
RARE Revolution Magazine
Accessible publication for the Rare Disease Community
Turning the tide for RARE disease
Everyone deserves a fair chance at living the healthiest life possible and having access to the right healthcare. Yet, for those living with rare diseases, this can often feel out of reach. This is what we refer to when we talk about health inequalities—an avoidable and unfair difference in health or access to healthcare between different people. Read more here.
A unique pairing of a specialised service in the NHS with a patient charity led to the development of ground-breaking and lifesaving self-advocacy tools that rare disease patients can use to ensure their needs are met. Genetic counsellor, Juliette Harris from the London Ehlers-Danlos Syndromes (EDS) national diagnostic service and colleagues from the charity Annabelle’s Challenge share their insights on this important pairing. Read here.
RARE Mitochondria
Sean Gordon is back with his RARETech column about how Hitech exoskeletons are supporting rare and other disease patients and how it’s not science fiction anymore. Read here.
In his latest RARE Reels column, Daniel shares his thoughts on two titles featuring the rare condition Creutzfeldt-Jakob disease. Read here.
Jessica has so beautifully recounted a period of her life where she experienced all the highs and lows of the human experience. This is a candid, real and relatable book that could be telling the story of many of our lives. Our loves, losses, wins, anticipatory fears, grief, and joys, all reflected in this beautifully told story. Read here.
Hero Kids uses animals and a magical garden storyline to explain the equipment and tools used in hospitals to help young people with rare disease. Read here.
Get involved
UK Rare Epilepsies Together (UKRET) is campaigning for access to more medicines to support those living in the UK with rare and complex epilepsies. They are seeking the experiences of parents/caregivers of people living with #LennoxGastautSyndrome to highlight the impact this condition has and the difference potential access to a new medicine could make. Complete the form at https://bit.ly/4i1F7ka Hurry. This form closes on Monday 2 December 2024
Are you a powered wheelchair user, or know someone who is? The Wheelchair Alliance is looking for people who use them to complete its survey. The call to action follows significant concerns on the categorisation of wheelchairs following the Department for Transport’s updated guidance linked to legislation surrounding the use of powered wheelchairs.The survey closes on Friday 6 December 2024. To complete the survey now, visit https://bit.ly/4i4ikEC
WE NEED YOU! We invite spiritual, faith and community leaders to share their knowledge and wisdom with the rare disease community. Would you be interested in writing for our Sunday Sessions series? Contact hello@rarerevolutionmagazine.com to register your interest. Check out our previous Sunday Session articles at https://bit.ly/40P1rqZ
Do you have an event, conference, webinar or awareness day coming up that you would like us to share with our RARE community? Please drop us an email to find out about the advertising packages we offer. If you are one of our charity partners then it's included in your member benefits. We offer a variety of media partnerships and tailored social media/newsletter advertising packages. With a monthly reach of over 5 million people we are always looking for relevant newsworthy content. Start a conversation with us today. Email hello@rarerevolutionmagazine.com for more information.
We support Rare Disease Day! Did you know? Collectively, the number of people living with a rare disease is equivalent to the population of the world's third-largest country. We'd like to thank everyone who has booked their place on our Rare Disease Day Takeover Day—all of our spaces have now been filled! Make sure you join us on 28 February 2025 to raise awareness for rare diseases, not-for-profits and charities! Are you connected to rare diseases and have a story to share? Email us at hello@rarerevolutionmagazine.com
Are you ready for Christmas? Our notebooks make the perfect stocking filler. They even feature the mascot of #RareDiseases, the zebra! From keen conference-goers to creative journal-makers, there's a notebook for everyone this festive season! Order now for delivery before Christmas at https://bit.ly/RARE-REV-SHOP
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