Have you secured your seat for the MENA Congress for Rare Diseases, in partnership with Burjeel Medical City, at Beach Rotana Hotel, Abu Dhabi, UAE from 16 to 19 May 2024?

We're proud to be media partners for the LARGEST event in the region.

Reserve at menararediseases.com/registration

Join James Chartes-Aris at our next RARE REV-inar on Thursday 23rd May 2024, at 4pm BST /11am ET where we discuss the nuance of being a male care partner and the impact it can have on careers and relationships.
bit.ly/RPV-REV-inar20…
@RarePatientVoic

Patients as Partners® EU offers the opportunity to hear from pharma and patient advocacy on how patient involvement gets done to drive efficiencies in clinical research.

May 14-15 2024, Plaisterers' Hall, London.

Use code RRM15 for a 15% discount. Visit patientsaspartnerseu.com

Our healthcare system is broken. But it doesn’t have to break you. This practical, realistic guide is designed to help women fight #MedicalBias and neglect in order to get the care they need—and deserve.
bit.ly/WomenInRARE-Il…
#WomenInRare #MedicalGaslighting #Gaslighting

Unique One-Day Women In Pharma Conference Taps Into The Passion & Talent Of 25 Leading Senior Women To Power The Future Success Of Pharma na.eventscloud.com/ereg/index.php…

NCBRS Worldwide Foundation announces inaugural “UNITED AGAIN” Family Conference – UK 2024.

Read more at bit.ly/3xIPLcS

NCBRS Worldwide Foundation - Nicolaides Baraitser

Motherhood (Plot twist) is an emotionally honest and stirring account of the many challenges faced when raising a child with complex needs. Aisling’s 2nd book, Hope is her honest account of life as she navigates her child starting school.
bit.ly/WomenInRARE-Ai…

Driven to build a world that welcomes and includes EVERYONE, Mindy is a powerful leader in disability rights, with specific interests in accessible air travel, universal design, employment and positive representation for disability in the media.
bit.ly/WomenInRARE-Mi… Muscular Dystrophy Association

Following the loss of their son Freeman, Misti and Will Staley used their experience of syringe and pump feeding and created the FreeArm, an aid to help other families. Now employed worldwide, the FreeArm is a wonderful legacy to their son.
bit.ly/MistiStaley
#WomenInRare

Today, Rareminds have published its long-awaited Rare Minds Matter - Mental Health & Rare Disease 2023 Survey Results.

Read the report now at: bit.ly/3witLW2. Find out more about Rareminds at rareminds.org.

She goes by many names. #Grandmother , #Oma , #Obaasan , #Abuela , #Oumas , #Maimeó , #Bibi , #Nonna , #Nana , #Babushka These women are highly influential within their communities. “Notes from Nana” highlights a seldom considered #influencer . Grandma.
bit.ly/WomenInRARE-No…
#WomenInRare

Join Celia Chartres-Aris at our next RARE REV-inar on Thursday 23rd May 2024, at 4pm BST /11am ET for an important discussion on the mental health impacts of being cared for while also being an incredible advocate.. bit.ly/RPV-REV-inar20…
@RarePatientVoic

Emily Reuben and Alex Johnson from Duchenne UK have both been awarded an OBE for their services to charity and to people with #DuchenneMuscularDystrophy ( #DMD ).
bit.ly/WomenInRARE-Al…
#WomenInRare

Patients as Partners® EU offers the opportunity to hear from pharma and patient advocacy on how patient involvement gets done to drive efficiencies in clinical research.

May 14-15 2024, Plaisterers' Hall, London.

Use code RRM15 for a 15% discount. Visit patientsaspartnerseu.com

That's a wrap! Thank you RARE Revolution Magazine and to everyone for tuning in to our #TuesdayTakeover . We're here for support and a listening ear for everyone in the TSC community tuberous-sclerosis.org/information-an… @uktsa

May 15th 2024 is TSC Global Awareness Day, the day for the international TSC community to share inform and stories to raise awareness of this condition, which affects an estimated 1 million people worldwide #RareDisease #AwarenessDay #TSGlobalDay tuberous-sclerosis.org/ts-global-awar… @uktsa

The #NHS TSC Clinics Network, which Tuberous Sclerosis Association oversees, was officially recognised by the NHS as a Rare Disease Collaborative Network (RDCN) last year! The network works to improve understanding of TSC and standardise clinical pathways #RareDisease tuberous-sclerosis.org/information-an…
@uktsa

#Diagnosis of #TSC marks the beginning of an unexpected journey for individuals and families. Here, Laura shares the moment her son Jonah was diagnosed with TSC. Tuberous Sclerosis Association are here to support everyone in the TSC community tuberous-sclerosis.org/life-with-tsc/…
#TuberousSclerosisComplex

TSC causes growths to develop in organs including the brain, heart + kidneys leading to problems including #epilepsy . Some people living with TSC may have few issues related to the condition, whilst others may need more specialist care #RareDisease tuberous-sclerosis.org/information-an… @uktsa

Good morning from the Tuberous Sclerosis Association! Huge thanks to RARE Revolution Magazine for hosting us for #TuesdayTakeover - we're excited to raise awareness of Tuberous Sclerosis Complex (TSC) and share how Tuberous Sclerosis Association can support you #RareDisease #PatientGroup tuberous-sclerosis.org