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A Rare Disease Giveaway to finish off #RareDisease Week 🎉🦓🎉 Alexandra Elaine Adams 🦓 instagram.com/p/CpVa-qSISHK/… Rare Disease UK Rare Disease Day @M4RareDiseases National Organization for Rare Disorders (NORD) Addison's Disease Self-Help Group (ADSHG) CORD

To mark #InternationalWomensDay we're celebrating some of the inspirational women who support our charity & community. From researching, improving patient care & awareness - thank you Julia SOLUtion Medical, @SofiaLlahana, Lisa shepherd 💙, Tilly Rose & Deana (ADSHG Founder)

Oh hey there is me 🙋‍♀️⬇️ and lots of superstar women helping to improve patient care & awareness ♀✨ #internationalwomensday

One of my proudest achievements on #InternationalWomensDay is launching ‘That Oxford Girl’, a FREE platform University of Oxford inspiring future generations of women ✨🎓✨ ➡️ thatoxfordgirl.com #oxforduni #oxforduniversity #universityofoxford #iwd2023

Insightful piece by @RSylvesterTimes I The Times today “So What Is The Cure For Our A&E?” As a perpetual patient, I have seen so many of these scenarios play out again and again 🚨 thetimes.co.uk/article/britai…

Huge congrats #TeamAddison for London Landmarks Half Marathon today 🏃‍♂️🏃‍♀️ Very proud @oscarjrgravell for smashing it and raising so much for Addison's Disease Self-Help Group (ADSHG) 🙌🎉

Congratulations to @oscarjrgravell on finishing the London Landmarks Half Marathon! You were amazing🌟 Thank you & Tilly Rose for your incredible support of our charity at #LLHM2023. 🏅 If you'd like to support Oscar, please visit: justgiving.com/oscar-gravell #TeamAddisons

I recently spoke to a doctor who said at the very point medics don’t know what to do/can’t find a diagnosis, they should think ‘genetic testing’. Ben Spencer article in The Times and The Sunday Times showing this is the future of medicine for diagnostic and treatment purposes 🧬

Today I overheard a little girl telling her mum that at school earlier her teacher told her she was brilliant at science. “She said I could be a scientist one day. How cool is that mum? I think that’s what I’ll be.” She’s right, this is very cool. 😎👩🏼‍🔬 #womeninscience #girlup

Have you been following Tilly Rose's takeover on our Instagram today? Follow her journey here: instagram.com/rarediseaseuk/

Loved doing this today Rare Disease UK trying to show the reality of living with a #raredisease through my ‘Day in the Life’ 💊 head over to Insta! #rarediseaseawareness

⏰An hour to go until our Twitter Chat for #AddisonsDiseaseDay! 💬Join our expert panel: @Anna_L_Mitchell Lisa shepherd 💙 Kate Davies Aldons @TillyRoseAuthor Giulia Bould Daniel Stewart & @esc4p33. 📍Use #AddisonsQA to join the conversation. addisonsdisease.org.uk/Event/twitter-…

Join me for the Addison's Disease Self-Help Group (ADSHG) q&a today on honour of Addison’s Disease Day!

I’m Tilly. I was diagnosed with Addison’s Disease in 2018, following a long deterioration which culminated in an adrenal crisis. The doctor said to me, ‘most people are diagnosed at the post-mortem’. This made me passionate about raising awareness Addison's Disease Self-Help Group (ADSHG) #AddisonsAQ

New post just out With more doctors strikes starting today; worst ever waiting lists/A&E times; + 1000s of excess deaths - I look at why the NHS crisis isn't getting better and what the key causes are. "How bad does it have to get?" (free to read) samf.substack.com/p/how-bad-does…

There have been a few articles on this recently Tom Parker Bowles Lucy Foster 🥛🥛🥛 I feel a little differently…a jug of unpasteurised milk on my breakfast cereal aged 5 on my great aunt’s dairy farm in Ireland, led to 13 years of undiagnosed active Tuberculosis 🦠

Thanks Tilly Rose for starting our ambassador meeting by sharing your own diagnostic odyssey and inspiring our own medical students and clinical ambassadors to #daretothinkrare

Our fabulous 2022/23 cohort sharing their own time on M4RD’s ambassador programme as a patient… a medical student… a clinician… #daretothinkrare

Look at all those happy smiley faces #daretothinkrare emotive.

Monoray at Octopus Publishing has signed Be Patient, a memoir by 'medical mystery' Tilly Rose bookbrunch.co.uk/page/article-d… (£)