Have you discovered our latest edition—RARE and social, sponsored by @PTCBio? This edition focuses on the good and bad of social media in rare disease advocacy. Inside this edition: - Under the Same Sun grassroots social media campaign, changing narratives for people with albinism across Africa. - The new campaign from @AJsChallenge, spreading nationwide awareness of vascular EDS. - How Yamina Hsaini has been harnessing the power of social media while navigating the rare condition, gastroparesis. Read now for free at bit.ly/RAREandSOCIAL

Earlier this year, the RARE Revolution team had the pleasure of designing a ‘More Tomorrows’ campaign with Annabelle’s Challenge, @AJsChallenge to drive for much-needed donations and further awareness of vascular Ehlers-Danlos syndrome. Through pushing public awareness and harnessing the awesome power of social media, together, we created a positive impact for people like Freddie, the star of this campaign. Read here: bit.ly/RAREandSocial-MoreTom… #RareAndSocial #RareDisease #SocialMedia #RARESocialMedia #SocialMediaAdvocacy #RareDisease #MoreTomorrows #vEDS #VascularEDS

The VEDS Movement, a division of the Marfan Foundation, drives research, education and support – and builds community – to improve outcomes, save lives and empower all people to thrive who are living with Vascular Ehlers-Danlos syndrome. Together with our community members, medical providers, and scientists, we can charge forward to raise awareness about VEDS. #VEDS thevedsmovement.org @MarfanFdn

Clinical trials matter for the VEDS Community. The "V" Matters. Learn why from Ryan Rodarmer, Director of the VEDS Movement. marfan.org/blog/why-clinical… #TheVMatters #ClinicalTrials #Research #VEDS #VascularEhlersDanlos #VEDSActionMonth2025 @MarfanFdn

Knowing the most common signs of VEDS in children can help lead to earlier testing and diagnosis -- potentially fostering brighter outcomes. VEDS looks different in every individual, not everyone will have all the signs - some people may have few to no outward signs. Learn more thevedsmovement.org #TheVMatters #VEDS #VEDSActionMonth2025 @MarfanFdn

It's incredible to see @AJsChallenge's campaign front and centre! Our RARE Revolution team are delighted to have played a part in making this happen for a great charity.