Lucy McKay
@loomoomahoo.bsky.social
CEO of Medics for Rare Disease. I want to see a world in which there is equitable healthcare for everyone. Trying to play my part in making this happen. Personal account. Views are my own. Trying not to burn out before #RareDiseaseDay
Last week a UK Supreme Court Judge said that sex is binary & "the biological characteristics that make an individual a man or a woman...are assumed to be self-explanatory and to require no further explanation".
But what about Lexi who is intersex? Listen now rdpodcast4medics.buzzsprout.com
But what about Lexi who is intersex? Listen now rdpodcast4medics.buzzsprout.com
April 25, 2025 at 10:00 AM
Last week a UK Supreme Court Judge said that sex is binary & "the biological characteristics that make an individual a man or a woman...are assumed to be self-explanatory and to require no further explanation".
But what about Lexi who is intersex? Listen now rdpodcast4medics.buzzsprout.com
But what about Lexi who is intersex? Listen now rdpodcast4medics.buzzsprout.com
@supremecourt.uk if you are so certain on what biological female sex is please could you define it clearly.
I'm a doctor, have a BSc in Human Genetics and work in rare disease advocacy.
I cannot define biological sex into two categories without denying the existence of my intersex friends
#sex
I'm a doctor, have a BSc in Human Genetics and work in rare disease advocacy.
I cannot define biological sex into two categories without denying the existence of my intersex friends
#sex
April 16, 2025 at 1:43 PM
@supremecourt.uk if you are so certain on what biological female sex is please could you define it clearly.
I'm a doctor, have a BSc in Human Genetics and work in rare disease advocacy.
I cannot define biological sex into two categories without denying the existence of my intersex friends
#sex
I'm a doctor, have a BSc in Human Genetics and work in rare disease advocacy.
I cannot define biological sex into two categories without denying the existence of my intersex friends
#sex
While all eyes are on the USA remember this University Chaplain who was arrested for saying "who elected him?" about King Charles while walking home in Oxford... Citizens being arrested for questioning an unelected head of state 🤔 www.theguardian.com/uk-news/2025...
Police admit arrest of anti-monarchy heckler in Oxford was unlawful
Symon Hill paid £2,500 by Thames Valley police over his arrest at proclamation of Charles III’s accession in 2022
www.theguardian.com
March 11, 2025 at 9:05 AM
While all eyes are on the USA remember this University Chaplain who was arrested for saying "who elected him?" about King Charles while walking home in Oxford... Citizens being arrested for questioning an unelected head of state 🤔 www.theguardian.com/uk-news/2025...
when it's your first French lesson after Rare Disease Day and you have to explain what you've been up to...
March 5, 2025 at 8:43 PM
when it's your first French lesson after Rare Disease Day and you have to explain what you've been up to...
Reposted by Lucy McKay
Have you ever felt unseen as a person impacted by rare disease? We hope this gallery featuring just some of the pictures from the NHS on Rare Disease Day will give you hope.
Listen - Learn - Advocate (repeat)
#ShowYourStripes #RareDisease #ThinkRare
www.m4rd.org/2025/03/04/r...
Listen - Learn - Advocate (repeat)
#ShowYourStripes #RareDisease #ThinkRare
www.m4rd.org/2025/03/04/r...
Rare Disease Day 2025 Gallery - M4RD
Thanks so much to everyone for getting involved with this year’s Rare Disease Day! It’s been amazing how many of you have shown your stripes and we can’t thank you […]
www.m4rd.org
March 5, 2025 at 5:24 PM
Have you ever felt unseen as a person impacted by rare disease? We hope this gallery featuring just some of the pictures from the NHS on Rare Disease Day will give you hope.
Listen - Learn - Advocate (repeat)
#ShowYourStripes #RareDisease #ThinkRare
www.m4rd.org/2025/03/04/r...
Listen - Learn - Advocate (repeat)
#ShowYourStripes #RareDisease #ThinkRare
www.m4rd.org/2025/03/04/r...
It's #RareDiseaseDay! 350 million+ people live worldwide with a rare condition. The majority start in childhood and families face terrible challenges due to ignorance and stigma. Break this pattern, #ShowYourStripes today in support of the Rare Community @medicsforrare.bsky.social
February 28, 2025 at 11:46 AM
It's #RareDiseaseDay! 350 million+ people live worldwide with a rare condition. The majority start in childhood and families face terrible challenges due to ignorance and stigma. Break this pattern, #ShowYourStripes today in support of the Rare Community @medicsforrare.bsky.social
Just re-watched Series One of 'Am I Being Unreasonable'. It is some of the best TV I have ever watched. Ready to watch Series 2 now! 😆 #BBC
February 26, 2025 at 9:58 PM
Just re-watched Series One of 'Am I Being Unreasonable'. It is some of the best TV I have ever watched. Ready to watch Series 2 now! 😆 #BBC
Uncertainty - the cardinal symptom of #RareDisease #RareDisease101 by @medicsforrare.bsky.social #RareSky
February 25, 2025 at 7:44 PM
Uncertainty - the cardinal symptom of #RareDisease #RareDisease101 by @medicsforrare.bsky.social #RareSky
Only a few hours until my next speaking event - Rare Disease 101. It's online and international. There's still time to sign up! #RareDisease
www.eventbrite.co.uk/e/rare-disea...
www.eventbrite.co.uk/e/rare-disea...
Rare Disease 101 for Rare Disease Day 2025!
Join Medics for Rare Disease and our fabulous guest speakers to celebrate Rare Disease Day with an updated, reimagined Rare Disease 101!
www.eventbrite.co.uk
February 25, 2025 at 4:25 PM
Only a few hours until my next speaking event - Rare Disease 101. It's online and international. There's still time to sign up! #RareDisease
www.eventbrite.co.uk/e/rare-disea...
www.eventbrite.co.uk/e/rare-disea...
Can we talk about the phrase "sicks kids"
I feel it's reductive & othering. Until recently I had never heard a scientist or clinician use this term. Now I can't go to a #raredisease conference without hearing researchers using it to explain the benefit of their research. Ok? Not ok? unsure?
I feel it's reductive & othering. Until recently I had never heard a scientist or clinician use this term. Now I can't go to a #raredisease conference without hearing researchers using it to explain the benefit of their research. Ok? Not ok? unsure?
February 24, 2025 at 10:06 AM
Can we talk about the phrase "sicks kids"
I feel it's reductive & othering. Until recently I had never heard a scientist or clinician use this term. Now I can't go to a #raredisease conference without hearing researchers using it to explain the benefit of their research. Ok? Not ok? unsure?
I feel it's reductive & othering. Until recently I had never heard a scientist or clinician use this term. Now I can't go to a #raredisease conference without hearing researchers using it to explain the benefit of their research. Ok? Not ok? unsure?
If you don't alreadt subscribe to Rare Revolution Magazine do it now. It's relevant to everyone because rare conditions affect 6% of the population and the chronic unmet needs of people has a broad impact on families and communities @rebecca-stewart.bsky.social rarerevolutionmagazine.com
February 24, 2025 at 8:57 AM
If you don't alreadt subscribe to Rare Revolution Magazine do it now. It's relevant to everyone because rare conditions affect 6% of the population and the chronic unmet needs of people has a broad impact on families and communities @rebecca-stewart.bsky.social rarerevolutionmagazine.com
Looking forward to speaking for @medicsforrare.bsky.social tomorrow. I will be presenting Rare Disease 101 at Magdalen College for this amazing event produced by medical students @ox.ac.uk #RareDiseaseDay www.eventbrite.co.uk/e/connecting...
Connecting the Dots: Oxford University Student Rare Disease Conference 2025
Join us at the Oxford University Student Rare Disease Conference 2025 and make a difference to the future of rare disease care!
www.eventbrite.co.uk
February 22, 2025 at 6:09 PM
Looking forward to speaking for @medicsforrare.bsky.social tomorrow. I will be presenting Rare Disease 101 at Magdalen College for this amazing event produced by medical students @ox.ac.uk #RareDiseaseDay www.eventbrite.co.uk/e/connecting...
An estimated 350 million people live with a rare condition worldwide. Regardless of where they live or which condition life can be very difficult due to a lack of awareness in society & healthcare. Break down ignorance & stigma - #ShowYourStripes this #RareDiseaseDay on Fri 28 Feb
February 21, 2025 at 11:50 AM
An estimated 350 million people live with a rare condition worldwide. Regardless of where they live or which condition life can be very difficult due to a lack of awareness in society & healthcare. Break down ignorance & stigma - #ShowYourStripes this #RareDiseaseDay on Fri 28 Feb
Tick Tock Tick Tock. Only 10 days until #RareDiseaseDay so get your socks ready to #ShowYourStripes Show support of 350 million people living worldwide with a rare condition on 28th Feb @medicsforrare.bsky.social
February 18, 2025 at 3:57 PM
Tick Tock Tick Tock. Only 10 days until #RareDiseaseDay so get your socks ready to #ShowYourStripes Show support of 350 million people living worldwide with a rare condition on 28th Feb @medicsforrare.bsky.social
Reposted by Lucy McKay
"CHI doesn’t define me, but it’s a big part of my life—the reason behind my learning, developmental & medical challenges. But I am much more.."
💙 I am the beat of a drum
💙 I am the song that’s sung
💙 I am more than you can see
💙 I am me
More than a diagnosis
#MoreThanYouCanImagine
#RareDiseaseDay
💙 I am the beat of a drum
💙 I am the song that’s sung
💙 I am more than you can see
💙 I am me
More than a diagnosis
#MoreThanYouCanImagine
#RareDiseaseDay
February 17, 2025 at 12:50 PM
"CHI doesn’t define me, but it’s a big part of my life—the reason behind my learning, developmental & medical challenges. But I am much more.."
💙 I am the beat of a drum
💙 I am the song that’s sung
💙 I am more than you can see
💙 I am me
More than a diagnosis
#MoreThanYouCanImagine
#RareDiseaseDay
💙 I am the beat of a drum
💙 I am the song that’s sung
💙 I am more than you can see
💙 I am me
More than a diagnosis
#MoreThanYouCanImagine
#RareDiseaseDay
It's busy at work so as a reprieve i have been going through the Unstable Unicorn deck and assigning everyone a unicorn alter-ego. I think I am Wrecking Ball Unicorn. @jojomcp.bsky.social ?
www.unicornsdatabase.com
www.unicornsdatabase.com
February 13, 2025 at 3:25 PM
It's busy at work so as a reprieve i have been going through the Unstable Unicorn deck and assigning everyone a unicorn alter-ego. I think I am Wrecking Ball Unicorn. @jojomcp.bsky.social ?
www.unicornsdatabase.com
www.unicornsdatabase.com
I am packing up a parcel for Mr Wes Streeting MP to ask him, as Secretary of State for Health and Social Care, to support the rare community and join the #ShowYourStripes campaign this #RareDiseaseDay. Is this advocacy or lobbying?
www.civilsociety.co.uk/news/sector-...
www.civilsociety.co.uk/news/sector-...
February 12, 2025 at 4:07 PM
I am packing up a parcel for Mr Wes Streeting MP to ask him, as Secretary of State for Health and Social Care, to support the rare community and join the #ShowYourStripes campaign this #RareDiseaseDay. Is this advocacy or lobbying?
www.civilsociety.co.uk/news/sector-...
www.civilsociety.co.uk/news/sector-...
#ShowYourStripes for #RareDiseaseDay - order zebra stripe #socks by Monday. Because guess who is packing the boxes...c'est moi!
I am in the office packing up the parcels on Monday and Tuesday. I don't want you to miss out!
Consider yourselves told! ❤️🦓
#RareDisease #RareSky #RareDiseaseDay
I am in the office packing up the parcels on Monday and Tuesday. I don't want you to miss out!
Consider yourselves told! ❤️🦓
#RareDisease #RareSky #RareDiseaseDay
It's your LAST CHANCE to submit your interest for bulk sock orders for our #ShowYourStripes campaign. The deadline date is the 10th of February (this Monday!) 🧦🦓 Go go go!
us17.list-manage.com/survey?u=364...
us17.list-manage.com/survey?u=364...
February 7, 2025 at 9:39 AM
#ShowYourStripes for #RareDiseaseDay - order zebra stripe #socks by Monday. Because guess who is packing the boxes...c'est moi!
I am in the office packing up the parcels on Monday and Tuesday. I don't want you to miss out!
Consider yourselves told! ❤️🦓
#RareDisease #RareSky #RareDiseaseDay
I am in the office packing up the parcels on Monday and Tuesday. I don't want you to miss out!
Consider yourselves told! ❤️🦓
#RareDisease #RareSky #RareDiseaseDay
@rebecca-stewart.bsky.social welcome to #RareSky !
February 6, 2025 at 12:26 PM
@rebecca-stewart.bsky.social welcome to #RareSky !
Reposted by Lucy McKay
We're holding this fantastic webinar on February 25th! Join us for an engaging and impactful Rare Disease 101 online training session, reimagined with updated content and a fresh new look. Sign up now! 7pm - 9pm.
www.m4rd.org/event/rare-d...
www.m4rd.org/event/rare-d...
January 27, 2025 at 4:51 PM
We're holding this fantastic webinar on February 25th! Join us for an engaging and impactful Rare Disease 101 online training session, reimagined with updated content and a fresh new look. Sign up now! 7pm - 9pm.
www.m4rd.org/event/rare-d...
www.m4rd.org/event/rare-d...
You know you are part of #RareSky when your relief that January is over is quickly met with panic that it's FEBRUARY! Rare Disease Day is upon us! #RareDisease @jojomcp.bsky.social @medicsforrare.bsky.social
a muppet with a big smile on his face is saying my brain right now .
ALT: a muppet with a big smile on his face is saying my brain right now .
media.tenor.com
February 4, 2025 at 5:52 PM
You know you are part of #RareSky when your relief that January is over is quickly met with panic that it's FEBRUARY! Rare Disease Day is upon us! #RareDisease @jojomcp.bsky.social @medicsforrare.bsky.social
I am enjoying reading a book about maritime escapades in 1700s. I drew a map to track the Wager on my remarkable after looking at my daughter's atlas (anything to avoid googling things). I couldn't work out the Cape Horn route right tho or wager island location avidgrann.bsky.social Score out of 10?
February 3, 2025 at 9:47 AM
I am enjoying reading a book about maritime escapades in 1700s. I drew a map to track the Wager on my remarkable after looking at my daughter's atlas (anything to avoid googling things). I couldn't work out the Cape Horn route right tho or wager island location avidgrann.bsky.social Score out of 10?
@iiamaish.bsky.social hello friend! welcome to #BlueSky and particularly to #RareSky @medicsforrare.bsky.social @jojomcp.bsky.social
February 3, 2025 at 8:56 AM
@iiamaish.bsky.social hello friend! welcome to #BlueSky and particularly to #RareSky @medicsforrare.bsky.social @jojomcp.bsky.social
My staff team have worn me down and I am watching The Traitors for the first time (no spoilers please). Watching how much people are suspicious of intelligence and kindness explains a lot about why certain politicians have reached scary levels of power #TheTraitors #HelpUsAll @jojomcp.bsky.social
January 31, 2025 at 9:41 PM
My staff team have worn me down and I am watching The Traitors for the first time (no spoilers please). Watching how much people are suspicious of intelligence and kindness explains a lot about why certain politicians have reached scary levels of power #TheTraitors #HelpUsAll @jojomcp.bsky.social
OK so I am 2 days late but I can't waste this beautiful image!
Don't wait until 28th Feb to decide how you're going to mark #RareDiseaseDay. Head to @medicsforrare.bsky.social website and downloading lots of beautiful digital assets for your socials & emails. Order stripey socks & #ShowYourStripes
Don't wait until 28th Feb to decide how you're going to mark #RareDiseaseDay. Head to @medicsforrare.bsky.social website and downloading lots of beautiful digital assets for your socials & emails. Order stripey socks & #ShowYourStripes
January 30, 2025 at 11:38 AM
OK so I am 2 days late but I can't waste this beautiful image!
Don't wait until 28th Feb to decide how you're going to mark #RareDiseaseDay. Head to @medicsforrare.bsky.social website and downloading lots of beautiful digital assets for your socials & emails. Order stripey socks & #ShowYourStripes
Don't wait until 28th Feb to decide how you're going to mark #RareDiseaseDay. Head to @medicsforrare.bsky.social website and downloading lots of beautiful digital assets for your socials & emails. Order stripey socks & #ShowYourStripes