RARE Youth Revolution

We’re back for another instalment of Advocacy Corner with #StiffPersonSyndrome (#SPS) advocate, Lea Jabre. Here, Lea talks about stress from outside factors having an impact on her #RareDisease. Do you have some wisdom to share from your own experiences? Email hello@rareyouthrevolution.com

Introducing our BRAND NEW series, 'Five Minutes with...' It's a chance to get to know more about young influential people in #RareDisease communities. First up, RARE Revolution Magazine's Joe Rumney interviews TikTok sensation, Dylan Lombard, who lives with #MDPSyndrome. Here, Dylan talks about discovering a love of photography and dancing, and how he overcomes negative comments. Read the blog at https://bit.ly/3YyfPSW

This week, it's Invisible Disabilities Week, which aims to bring education, awareness and support for those who live with disabilities that aren't visible. Chelsea Wong, who lives with lupus, told RARE Youth Revolution: "Since lupus is an invisible illness, I am often seen as ‘healthy’. It sometimes makes me feel I don’t have the challenges I have and that I am a burden for explaining my reality. It took me years to be in a place where I can share my experience comfortably, where I am making the invisible in my condition, visible.” Read our blogs focused on Invisible Diseases at https://bit.ly/4dUkfZ3

It's #ThrowbackThursday! This month it's #NationalDisabilityEmploymentAwarenessMonth. Today, we're looking back at a blog by Courtney Felle who wrote about the challenges in #DisabilityEmployment. Here, Courtney talks about the need for remote work in a world post-COVID-19 and the difficulties of obtaining meaningful employment for people with #Disabilities. Read more at https://bit.ly/4f0J0U3

In our latest blog, Joe Rumney writes about the grief he experienced after losing his mum and the subsequent questions about how he would manage his rare disease, #Cystinosis, without her. He also offers some tips on how to move forward without a loved one. "It’s ironic really, that one of the people who was strong enough to fight for my diagnosis, and subsequent health battles, was now, herself, becoming weaker by the day." Read at https://bit.ly/3U5Hjgj

From The Guardian: ‘My #Disability is the least interesting thing about me’: Actor Adam Pearson on fame, film and his sibling rivalry" Actor Adam Pearson feels disfigurement onscreen is often presented as a problem. He sees it very differently. He talks about karaoke in Croydon, rivalry with his twin, Oscar ambitions – and why his mum refuses to believe he’s famous Read at https://bit.ly/4dJYDyv

Did you know? It once took 10 years to read just one DNA sequence, it now takes just two days to read the #DNA of 40 people! You can find out more about #Genetics in our 'My life, my genetics' series at https://lnkd.in/ea8y_xCB

Join midwife and #NecrotisingEnterocolitis survivor Anna on #StomaAwarenessDay, which was on Saturday. You can follow Anna on Instagram at @what_happened_nec.t Find out more about us at rareyouthrevolution.com

How much do you know about #GeneticSequencing? Watch Katie's tour of the Illumina labs at https://bit.ly/3Y8Ko1v

The NHS England Youth Forum needs your help to improve the #HealthcareTransition from child to adult services within the NHS—an area many of us have some experience with! So, please take 5 minutes to fill out this totally anonymous survey. To complete the survey for young people up to 30 years of age, visit https://bit.ly/3TU0oSB. Or to complete the survey for patients and carers, visit https://bit.ly/4dBkasN Hurry! Both surveys are only live until 17 October!