Tag: Strut Your Stripes

RAREfest22 – At the forefront of this event are the patients themselves!

Post author By fibrofly73
Post date November 14, 2022
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RAREfest22 is the world’s only rare disease-inspired festival attracting an audience of stakeholders alongside the public. Festival-goers listen to expert talks, watch films, interact with around 25 exhibits, hear powerful patient stories and mingle with those taking part and others attending.

Tags arts and crafts, Cambridge Rare Disease Network, genetics, genetics and genomics, Life sciences, patient voice, rare disease, Rare disease awareness, RAREfest22, Research, science and technology, Stronger Together, Strut Your Stripes

Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Charities EDS EVENTS HYPERMOBILITY Hypermobility Spectrum Disorders Join the Community Medical Conditions / Disorders Medical news stories, blogs and research Musculoskeletal Patient Advocacy Rare Rare Disease Advocacy rare genetic disorder Supporters / Ambassadors Zebra Strutters

Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!

Post author By fibrofly73
Post date June 28, 2021
1 Comment on Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!

A simple goal of signal boosting rare and undiagnosed patient and community messages. August week long event, joining allies, advocates, small and large non-profit organisations, and others who wish to elevate rare and undiagnosed voices.

Tags #dazzle4rare, chronic illness, Ehlers-Danlos Syndromes, patient voice, Pigmented Villonodular Synovitis, Rare Disease Advocacy, Rare disease awareness, Rare disease event, Rare Musculoskeletal Diseases, share your rare, Strut Your Stripes, Ultra Rare Disease, Zebra Strutters

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