This month is Huntington's Awareness Month and in November 2022, Lucy spoke to Consultant Neurologist Ed Wild all about Huntington's in our podcast! Listen back now, it's a brilliant episode! #HuntingtonsDisease #HuntingtonsDisease AwarenessMonth

open.spotify.com/episode/5FHhcW…

Lucy will be speaking at RareQoL's EDIRA 2024 event taking place on June 21st in Birmingham! Their second event, the 'Building Trust Symposium! is a place where EDI meets mixed methods research! Buy tickets now!

eventbrite.co.uk/e/edira-2024-b…

The conversation also highlighted multistakeholder frameworks and and increased integration of physical and mental health care pathways as vital avenues for addressing the challenges. Medics4RareDiseases

An incredibly inspirational and insightful podcast. Lucy clearly demonstrates the power and impact of sharing the collective lived experiences of the rare disease community to raise awareness, educate, drive policy change and improve services. Take a listen in the link below

Medics4RareDiseases have identified seven red flags or clinical clues, through their new study that point to a patient having an underlying rare condition!

Read the full report and see all seven of the red flags here ojrd.biomedcentral.com/articles/10.11…

IT'S OUT! 😮 Through a new study, we have identified seven red flags, or clinical clues, that point to a patient having an underlying #rarecondition ! 🚩 Read the full report now. Thanks again to everyone who took part in the survey!

ojrd.biomedcentral.com/articles/10.11…

Farewell to Nadine 👋 who is moving on from Medics4RareDiseases today to start a new role! Nadine first joined us as an Executive Assistant and after 6 months became M4RD's Project Co-ordinator! Read what Nadine had to say about her time at M4RD!
m4rd.org/2024/05/20/my-…

Lucy was recently on Medscape Education “Hear from Her” podcast series! 😃In her chat with Abigail Epstein from Takeda, they talk about the challenges of working in rare disease and why women are the drivers of change. Listen now! open.spotify.com/show/0uxarlNtu…

Get your tickets for the #EDIRA Building Trust Symposium RareQoL event on the 21st June 2024 in Birmingham.
Fantastic array of speakers
Dr Sondra Butterworth. Community Psychologist Medics4RareDiseases NIHR Research Sickle Cell Society Takeda NIHR BioResource Astellas Europe LifeArc
rareqol.com/edira-2024-sym…

'Leyna had been experiencing migraines which prompted a visit to the GP. Tests showed her blood pressure was so high that she was at risk of having a stroke. A subsequent biopsy confirmed kidney disease, with Leyna’s kidney function at just 10%'

kidneyresearchuk.org/2024/05/07/rar…

#EDIRA 6 WEEKS TO GO.
There is a high demand for ticket book yours today.
Follow this link.
lnkd.in/eQpehzeq

#clinicaltrials #patientadvocates #raredisease #equality #equity #diversity #inclusion #research #funding
#Sponsors

Thank you to everyone for coming along to the Galactic Genomes 🧬 event at Cambridge University ! We are so proud of how it all turned out and congrats to our ambassador Jenny Yang for doing such an amazing job 👏

We're very proud to be partnering with EURORDIS-Rare Diseases Europe on the upcoming ECRD on 15 & 16 May 2024! Register now! Members of our network get 15% off with the promo code: ECRD24_15%_Partners
Get your tickets now! #ECRD2024 invt.io/1txbm76cqw8

The Rare Minds Matter 2023 Survey Results have now been published by Rareminds! The report explores the post-pandemic #mentalhealth experiences of the UK's rare community, shedding light on an often overlooked aspect of living with a #rarecondition .
bit.ly/RareMindsMatte…

Watch the BBC Lifeline appeal on BBC One on today at 12.50pm and BBC Two on Thursday 2 May at 12:50pm featuring the Huntington's Disease Association.

Together we will build a better life for people affected by Huntington's disease.
loom.ly/hn35zXk

For the last episode of the season of The #RareDisease Podcast for Medics, our communications lead Emma Huskinson hosts a one-off episode with Emma Macleod and Charlotte Roe who work for our communications agency emotive.. Listen now! 🎧

rdpodcast4medics.buzzsprout.com/share

The majority of individuals living with #raredisease report having felt anxious, stressed, and/or depressed due to their condition. Support the #IAmNumber17 campaign and help us be heard to #ElevateCareForRare .

Today Jo is attending the House of Commons to represent M4RD at the 'I am number 17' campaign's parliamentary launch 🤸 Organised and funded by Takeda in collaboration with campaign partners including us! #IAmNumber17 #ElevateCareForRare .