If you/your advocacy organisation has participated in any co-design activities with industry, how would you rate your experience of taking part?

Harnessing the influence and reach of social media can be a powerful way of disseminating information, awareness and a call to action, especially for small charities and not-for-profits. The messaging can be tailored for a specific audience or stakeholder and be far-reaching.

On Mastocytosis and Mast Cell Diseases Awareness Day, we’re delighted to be able to offer you our spotlight edition on systemic mastocytosis in five additional languages—Spanish, German, Portuguese, Italian and French. Sponsored by Blueprint Medicines, this edition looks at the

Holly Landrum Peay, Senior Director at Faegre Drinker Consulting, shares her inspiring journey from genetic counselling to leading patient-centred research in rare disease. With a focus on community engagement and user-centred design, Holly champions meaningful collaboration with

This edition of RARE Revolution Magazine explores the profound meaning of 'social' in a globally connected world, particularly for those in the rare disease community. Discover how social media amplifies advocacy and industry reach, connecting millions worldwide. We delve into

What is Rett syndrome? What are the impacts of this rare progressive condition and what are the signs to spot? Learn more and help spread the word with our downloadable infographic here: https://t.co/OlvdifDunY #RettSyndrome #GeneticDiagnosis #RareDiseases

Presented by our Trustee Jon Garrard, our BBC Radio 4 Appeal is airing on Sunday 19 October. Listen on the day to help us raise as much money for research as possible! Donate to the appeal and help us create a better future https://t.co/XlF5uJ8T0z #BBCRadio4Appeal #Research

PSPA Trustee Jon Garrard's Dad Chris was diagnosed with Parkinson’s before further investigations found it to be PSP. He shared his story and why he’s presenting our BBC Radio 4 Appeal in our magazine, PSPA Matters https://t.co/OlWJePAf6b #BBCRadio4Appeal #DigitalMagazine

Our BBC Radio 4 Appeal, recorded by our Trustee Jon Garrard, is being broadcast on Sunday 19 October 2025. Jon will share his dad Chris’ story, who he sadly lost to PSP. Please tune into the BBC Radio 4 Appeal and donate what you can. #BBCRadio4 @PSPAssociation

Not enough is known about PSP and CBD. Our Appeal Ambassador, Professor James Rowe shared why more research is needed and how it could aid a treatment sooner rather than later. What would you like research to fund? Tell us in the comments. #Research @PSPAssociation

We are the PSP Association, the only UK charity dedicated to helping people living with rare conditions PSP & CBD. We are always looking for more passionate people to join our cause. Learn more about us: https://t.co/f5NUaoLFj8 #PSPA #SupportUS #Volunteering @PSPAssociation

Corticobasal Degeneration (CBD) is a progressive, neurological condition. Symptoms of CBD include having one side of the body being more affected, speech difficulties, an “alien limb”, and more. Learn about the condition: https://t.co/77TOYFgBhK #RareDiseases @PSPAssociation

There could be up to 10,000 people living with PSP in the UK. But what is it? Progressive Supranuclear Palsy is a complex neurological condition that affects movement, balance, speech, vision, and swallowing. Learn more https://t.co/juRbxKDdoL #PSP #RareDiseases @PSPAssociation

We are delighted to launch our Autumn 2025 edition of RARE Revolution Magazine®, sponsored by and developed with @PTCBio. This issue highlights the power of social media in rare disease advocacy but also the darker side of having an online presence, where sharing can sometimes

In the highly regulated world of clinical research, an innovative approach is emerging that promises to transform how medical treatments are developed. One2Treat, a pioneering tech company, is challenging traditional clinical trial design by putting patients at the heart of the

We're back with another Charity Partner spotlight. This time, it's The International Waldenstrom’s Macroglobulinemia Foundation (IWMF). The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is a patient-founded and patient-driven nonprofit organisation, dedicated

Have you found a moment to watch our latest REV-inar, Empowering patients: co-designing clinical trials for better outcomes, sponsored by @rarepatienvtoic? You can find the full RARE Rev-inar playlist on YouTube at https://t.co/pzPHFSMC0E

RARE Revolution poll reveals patient needs are worryingly overlooked in clinical trial design. insights brings you the latest views from your global RARE community. https://t.co/dNRqmL5VJO

Bob Stevens, CEO of the MPS Society, argues that traditional randomised controlled trials are unethical for rare and ultra-rare diseases, especially when neurological involvement leads to irreversible decline. He advocates for a better way forward using biomarkers as early

Coming soon, our Autumn 2025 edition of RARE Revolution Magazine - RARE and Social. Sponsored by and developed with PTC Therapeutics. This issue highlights the power of social media in rare disease advocacy but also the darker side of having an online presence, where sharing can