RARE Round-up 02/08/2024 - keeping you up-to-date
RARE Revolution Magazine
Accessible publication for the Rare Disease Community
Rare Disease Day 2025
IMPORTANT RARE DISEASE DAY NEWS
We know it seems impossible to think, but Rare Disease Day 2025 is only 7 months away which means the RARE Rev team are now turning our attention to our RDD strategy, and it is time you do too.
Last year RARE Revolution Magazine reached over 4.5 million people with our RDD issue alone and 2025 is going to be bigger and better, so you do not want to miss out on this opportunity to get your organisation at the forefront of our activities.
So we are pleased to announce that our 2025 RDD flagship issue and RDD RARE Rev-inar is now open for booking!
To find out how to secure our prime 2025 opportunity, email hello@rarerevolutionmagazine.com now to arrange a call.
Check out our RDD 24 issue here: https://lnkd.in/edYFXmed
RARE RECAP
Today, we're looking back at the content we published in July!
RARE REVOLUTION MAGAZINE:
INDUSTRY INSIGHTS:
CHARITY AND ADVOCACY:
LETTERS:
TURNING THE TIDE FOR RARE DISEASE:
RARE NEWS:
Do you enjoy seeing our content? Why not support us via our patron sign-up? Visit https://bit.ly/RR-Patron-Sign-Up-Web. Visit rarerevolutionmagazine.com for more.
Industry Insights
NEW to Industry Insights, Nicola Redfern asks 'Cell and gene therapies: Where are we now?' Seven months after her first column, Nicola updates us on the latest developments. Read now at https://bit.ly/3WIdjsA
RARE Insights
Ngozi Onwuchekwa (MBA, BA Hons) is the recent survivor of a sarcoma—a rare type of #Cancer that develops in the bone and soft tissue. Within a year of remission, she won the Mrs Exceptional Lady Universe crown at the 2023 Mrs Universe pageant.
Today, Ngozi is a passionate advocate and a fundraising partner of Sarcoma UK. Here, for #SarcomaAwarenessMonth, her Letter to the Editor highlights the essential need for prompt diagnosis and early referrals. Read the full letter at https://bit.ly/3SiUpWy
RARE NEWS
cTAP Study indicates Duchenne muscular dystrophy clinical trial enrolment criteria should expand beyond ambulatory status. Study co-funded by CureDuchenne and cTAP highlights need for more specific enrolment criteria that could increase patient participation and drive more comprehensive therapeutic evaluation. Read here.
Landmarks shine pink and purple for National Eosinophilic Week. ausEE Inc. is encouraging the community to get involved by visiting a participating landmark, and taking a picture to share on social media, using the hashtags #EOSLightUp, #NEOSW2024 and #EOSaware. Read more here.
Ten major stakeholders of the French healthcare sector are committed to accelerate the development of personalised, predictive, preventive, and participatory medicine for patients suffering from drug-resistant developmental and epileptic encephalopathies. Read here.
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📌 Registration for the fifth regional conference on rare diseases, Caring for Rare, is now open! The conference will be held on 12 to 14 September 2024 in Belgrade, Serbia and online. To find out more and register, visit norbs.civicatalyst.org/caring4rare-registration-form
Your new conversation starter is here! Stand out from the crowd with our NEW range of lined notebooks, featuring the mascot of rare diseases, the zebra!
Whether a companion for your next rare disease conference or even just somewhere to spill your personal jottings—we have a notebook for everyone! Get yours today by visiting the RARE Revolution Magazine Shop at rarerevolutionmagazine.com/shop
Please contact us to discuss bulk orders for conferences and working sessions to activate your bulk discount: hello@rarerevolutionmagazine.com
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