RARE Revolution Magazine

As a voice for the community, we always strive to hold a mirror up to the experiences of that community. Our summer issue reflects the ripples of uncertainty being felt across the ecosystem. #Inequitable #Inaccessible #Deprioritised #Marginalised #Isolated #Forgotten? Under-funded Under-represented Under-supported Under-served. Hard to reach but must be heard. Read more here: https://lnkd.in/euuRtZMp #UnderservedCommunities #RareDisease

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

Help create a beauty industry that looks like you. The British Beauty Council has launched a survey to better understand how to improve equity, #Accessibility and inclusivity in the beauty industry. They want to discover if you feel included, represented and have access to the kind of career opportunities, products and services you need and desire. 👉 Complete the anonymous survey at https://bit.ly/4eOQLgR

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: https://bit.ly/3ztBRMD #MedicalDebt #CoPay #HealthInsurance #HealthCare

Have you registered for USH Connect 2024? Registration is now open! 💚 What is Usher Syndrome? - It is a rare, genetically inherited disease and its main symptoms include sensorineural hearing loss and retinitis pigmentosa which causes a slow progressive loss of sight. For some USH types, there are also balance issues too. Join the USH community, including Usher Syndrome Ireland on Saturday 21 September from 10am at The National Museum of Ireland, Dublin. To find more information and to reserve your FREE tickets, visit https://bit.ly/3xL3bpg

We're here to give another shoutout to another of our Charity Partners. This time it's Debra UK: The Butterfly Skin Charity. DEBRA UK is the national charity and patient support organisation for people living with or directly affected by #EpidermolysisBullosa. DEBRA does not receive statutory funding and relies on the income generated by its charity shops and fundraising activities to provide care and support for people living with EB, and to fund pioneering research to find effective treatments and ultimately, cure(s) for EB. Find out more about Debra UK at debra.org.uk

Navigating a bereavement is one of the hardest things anyone will have to face in life, especially when connected to a #RareDisease—but you're not alone. 🦋 Together with our RARE Revolutionaries, we compiled some advice and insights for coping with RARE grief. 👉 You can read and download these resources at https://lnkd.in/eWtC_hwH

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

Carla Scaramella, founder of Hirschsprung Argentina, and Luciana Pareto, founder of AMAR, describe how their two patient advocacy groups have come together to advocate for families affected by Hirschsprung’s disease and anorectal malformations. https://lnkd.in/evZxJatm #RareDisease #Hirschsprungs #AnorectalMalformations #ImperforateAnus #HirschsprungArgentina #AMAR #HospitalItalianoBuenosAires

Carla Scaramella, fundadora de Hirschsprung Argentina, y Luciana Pareto, fundadora de AMAR, describen cómo sus dos agrupaciones de pacientes se han unido para abogar por las familias afectadas por la enfermedad de Hirschsprung y las malformaciones anorrectales. https://lnkd.in/eNngVQJ5 #EnfermedadPocoFrecuente #EPOF #EnfermedadRara #Hirschsprungs #MalformacionAnorrectal #AnoImperforado #HirschsprungArgentina #AMAR #HospitalItalianoBuenosAires