We are so happy to say that the winner of The Student Voice Prize's English as a Second Language category Diya Porwal has written a blog all about her experience applying and the advice she would give to future applicants! 😃

m4rd.org/2024/04/16/my-…

Can YOU help support this fantastic event? 👍
We are so happy to say that we are working with our ambassador Jenny Yang to bring you Galactic Genomes: Exploring the Universe of Rare Diseases!

You don't want to miss this one!!! Tickets are £5🎈

eventbrite.co.uk/e/galactic-gen…

Thank you to Science Direct for the mention!! 👏👍😍sciencedirect.com/science/articl…

We're HIRING! Could you be our new Training Programmes Manager? We want to hear from you! 👏

Check out the full job description and apply now! 😍 You have until the 3rd of May! 👍

m4rd.org/2024/04/04/wer…

We're really excited to share that Diya Porwal's essay is now available to read! 🙌

📝Battling uncertainty: The story of a SCAD survivor

Read here: 👇

ow.ly/7vyi50RcZLh

Well what a fantastic #NationalSiblingsDay2024 that was! Thanks to all those who shared their #ItsaSiblingThing We will be carrying on the conversation over the next few days – so come and join in! ICYMI – check out Mohamed’s sibling story sibs.org.uk/mohamed

For this week’s episode of the podcast, Lucy chats to Jonathan Gibson who works as the Policy and Public Affairs Officer for Metabolic Support UK! Listen now via the link below🎧

rdpodcast4medics.buzzsprout.com/share

#EDIRA Tickets go on sale this week! Save the date 21st June. We anticipate high demand for this event. Keep checking for updates. Join us 21/06/2024 and ourfabulous facilitators Humie Webbe PIP-UK Dr Jane Brearley Medics4RareDiseases Edward Oloidi Health and Care Research Wales LifeArc Race Council Cymru

'This is a photo of me and my brother Tom. He's been through a lot, health-wise, in his life and I'm full of admiration for the way he's handled it! We always make the most of the days we go to London for hospital appointments' #NationalSiblingsDay2024 Sibs ❤️

Oscar has NF2 related Schwannomatosis and his brother Dylan looks out for him and importantly fundraises to raise money for research into new treatments or a cure into NF2. He raised over £10,000 & received an award from Nottingham Police. #NationalSiblingsDay2024 Sibs ❤️

'My sister gets me more than our own family and friends. She knows me well enough to know what I need to brighten my day & and she's developed maturely to understand my rare condition. I can't imagine a world without my sister.' Aisha Seedat ❤️ #NationalSiblingsDay2024

As today's #nationalsiblingsday we're thinking about all those brilliant people growing up with a brother or sister who has a rare chromosome or gene condition, to let them know how amazing they are. Our guide to supporting siblings is free at rarechromo.org/disorder-guide…

We'd like to say a huge congratulations to our English as a second language winner, Diya Porwal! 🎉

📝 Winning essay title: Battling uncertainty: The story of a SCAD survivor

Watch this space for Diya's essay coming soon on @rarebeacon 's blog! 🤩

#SVP23

For this week's episode of the #podcast , Lucy is joined by Daval Amratlal, who is one of our patient ambassadors and has a rare skin condition called Autosomal Recessive Epidermolysis Bullosa Simplex.
Listen now! rdpodcast4medics.buzzsprout.com/share

#EDIRA Save the date 21st June 2024. Our Building Trust Symposium at the Edgbaston Conference centre Uni of Birmingham. Tickets on sale next week. Genomics Partnership Wales (GPW) Humie Webbe LifeArc Health and Care Research Wales University of Chester Medics4RareDiseases Intent Health Rhiannon T Edwards Edward Oloidi Breaking Down Barriers

WOW! 😍 We are so thrilled to announce a major development in #raredisease education for healthcare professionals: four knowledge summaries were published to NHS England's GeNotes before #Rare DiseaseDay2024, authored by us! Read more now!
m4rd.org/2024/04/02/lau…

At the Unusual Suspects back in February, Jono Lancaster delivered a very thought-provoking talk you all need to hear. We've put his talk together in a wonderful #podcast episode so you can listen back and hear the whole thing! Go listen now! 🎧👏

rdpodcast4medics.buzzsprout.com/share

For this week's episode of the podcast, Lucy chats with Kelly Kearley who is the charity manager for ptenuki. Listen to the full podcast now! > rdpodcast4medics.buzzsprout.com/share

We're getting ready for Lynch Syndrome Awareness Day on Friday.

What do you know about this common genetic condition?

Find out more bit.ly/LynchInfo

Are you interested in delving into the vast potential of cell and gene therapy?

The RoySocMed are holding an event that explores the ground-breaking advances and transformative approaches offered by gene therapies! Book now for this in-person event 👍

rsm.ac.uk/events/rsm-stu…