RARE Round-up - keeping you up-to-date

RARE Insights

In our latest Turning the Tide for Rare Disease article, the Stiff person syndrome (SPS) community reacts to I am: Celine Dion. Following the release, an international panel of patients came together to discuss the singer's documentary and their experiences with SPS. Read at?https://bit.ly/467Glop

Challenges and priorities for the PSP and CBD community: Insights from Mark Jackson from PSPA. Read at?https://bit.ly/4cSTXWO

The CMT Research Foundation to launch grant program to support young investigators working on CMT. Read at https://bit.ly/3LmsG3g

Navigating healthcare is challenging for most individuals and families, but for those with rare or chronic health conditions who are also living in underserved communities, the obstacles are exacerbated.

While most patients with rare conditions experience delayed diagnosis and limited treatment options, underserved populations also struggle with hurdles such as lack of access to specialist care, limited local resources and support, and the crushing financial burden of managing their complex condition. Read more here.

NHL All-Star Ryan Getzlaf returns to the links for the 13th Annual Getzlaf Golf Shootout on September 13-14, benefiting CureDuchenne. Read at?https://bit.ly/3SaTLKS

Events?

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 [email protected]

Osteogenesis Imperfecta Federation Europe is calling for abstracts.OIFE is delighted to announce that the abstract form for its 3rd virtual European Investigator Meeting is now OPEN.

The meeting will take place via Zoom on Friday 15 November from 14:00-19:00 CET.Abstracts on any aspect of OI research are invited, whether basic, translational or clinical. A limited number of oral slots are available on the programme and priority will be given to abstracts describing novel research and hot topics related to OI.

The submission of case reports is also welcomed for discussion at the meeting. Please use the same form to submit any interesting and/or unusual cases. Presentations will not be recorded or streamed outside of the webinar and abstracts will not be published, enabling the presentation and discussion of unpublished data.

This is an opportunity for you to present and discuss your OI-related work with an international group of fellow OI-researchers in a relatively informal setting and without the costs and time involved in travelling to in-person meetings. The aim is to facilitate collaboration and development of research in OI.

Deadline for abstracts: Friday, 4 October 23:59 CET.

The link to submit abstracts and registration can be found here:?https://bit.ly/3zUo6GV

Don't forget to registry for the only annual symposium fully dedicated to Leigh syndrome. Please register here:?https://leighsyndrome.eventbrite.com/

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: [email protected]

At RARE Revolution Magazine we have always striven to do media differently. This means no paywall or paid subscription placing a barrier between you and our current content or our extensive back issues library. It means that ALL our earned media goes to individuals, charities and not-for-profits in the rare disease space. And it means that we ourselves are a not-for-profit organisation, so we can belong to the community we serve.

But we are often asked by our audience how the community can support our work. So, for those who feel able, you can now support the work of RARE Revolution Magazine and RARE Youth Revolution via our?patron?sign-up, and for as little as the cost of one cup of tea a month! And because we are mission-driven first and foremost, 10% of any profits from the?patron?sign-up will be donated to a community-nominated rare disease charity every 12 months.

The link below will take you to PayPal to set up a recurring debit/credit card charge of ￡3.00 (or local currency equivalent), which will continue until such time as you choose to cancel (through your PayPal account).

https://bit.ly/RARE-Rev-patron-monthly

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