Meditate for Rare 🦓 🧘♀️ 28.02.25
Let’s come together this Rare Disease Day for an extra special event.
I will be guiding a meditation to honour the rare disease community and the main goal of @goraredisease , which is to dissolve the boundary between rare and common.
Similarly meditation is all about dissolving differences and finding unity with the self and each other.
Sign up via my bio link. Pay what you can with all proceeds going to GO RARE
No experience of meditation necessary - it will be fully guided by me.
5:30pm UK time on 28th Feb
Recording will be available.
Let’s do this for Rare 🦓
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#rarediseaseday2025 #berareaware #rarediseasekids #onlinemeditation #meditatewithme #mindfulness #community #unity #raredisease #rarediseaseday #fyp #share #health #healthylifestyle #meditate #meditating
What can the rest of the world learn from the rare disease community?
How to unite in spite of differences (that don’t really matter!)
Share this with your friends and family! 🦓
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#raredisease #rareismanyrareisstrongrareisproud #rarediseases #rarediseaseadvocacy #rarediseaseday #rarediseaseawareness #threedegreestoraredisease #socialjustice #rarediseaseadvocate #rarediseaseadvocacy #jointhemovement #jointheherd #jointheherdandbeheard
🦓 Only the beginning 🦓
It’s the big day! But rare disease day isn’t really just one day at all.
For those living with a rare disease, and the people that care for them, it’s all day, every day.
Following everything we have shared over this past month, what will you do to keep up the momentum?
What act of advocacy (small or big) will you engage in?
Let us know in the comments!
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#rarediseaseday #rarediseaseday2025 #rarediseaseday2025💜💚💙💛❤️ #rarediseaseday2025🦓🦓🦓🧬🌎 #morethanyoucanimagine #careaboutrare #rareismany #rareismanyrareisstrongrareisproud #rarewarrior #rarediseasemom #rarediseasesinternational #rarediseaseawareness
📢 “Small a” Advocacy: The Everyday Actions That Create Big Change
Advocacy isn’t just about policies and protests—it’s also about small, everyday actions that shift perspectives and build momentum for change.
Here’s how you can be a rare disease ally today:
✅ Share a post about rare diseases to educate your network.
✅ Correct misinformation when you hear it.
✅ Talk to your workplace about better policies for employees with rare conditions.
✅ Write to your MP/congressman about gaps in rare disease care.
✅ Show up for Rare Disease Day events.
💡 Small actions create big impact. What’s one way you advocate in your daily life? Let us know in the comments!
#GoRare #AdvocacyMatters #MakeRareRecognisable #RareDiseaseDay #medicalequity #healthequity #healthequitynow #genetherapy #medicalmom
🚨 Share this with your non-rare friends! 🚨
It’s time for the allies to STEP UP.
There are 350 million+ people living with a Rare Disease worldwide.
1 in 10 living in the USA have a Rare Disease.
1 in 17 living in the UK have a Rare Disease.
Our community is everywhere and we are impossible to ignore.
Call on your friends and networks to be an ally this Rare Disease Day!
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#rarediseaseday #rarediseaseday2025 #rarediseaseday2025💜💚💙💛❤️ #berareaware #lightupforrare #health #medicalinnovation #genetherapy #geneticdisorders #geneticresearch
If cancer patients waited 5+ years for a diagnosis, there would be outrage.
If heart disease patients had no approved treatments, it would be a scandal.
So why do rare disease patients hear, “Sorry, nothing we can do”?
🚨 Delayed diagnoses.
🚨 No research.
🚨 No treatment access.
We refuse to accept this. With Rare Disease Day fast approaching, it is time to demand better.
IMPORTANT: You don’t have to have a rare disease to join this fight, in fact, what we really need are ALLIES. Those doing the bulk of the fight at present are parents and caregivers, who have their plates incredibly full most of the time, so allyship from those who can is incredibly beneficial - essential even.
💡 Join GO RARE and BE OUR ALLY
#rarediseasetruth #rarediseasestory #rarediseasepodcast #rarediseaseday #beanally #beanallynotabystander #beourally #careaboutrare #lightupforrare #rarediseaseday2025 #geneticcondition #humanrights
This Rare Disease Day, don’t just “raise awareness.” Fight for change.
💔 Patients don’t just need recognition.
💪 They need equitable care, access to treatments, and research funding.
Today, show love by standing with the rare disease community. Tag someone who inspires you!
Join the GO RARE movement
#GoRare #RareDiseaseDay #LoveIsAdvocacy #FightForRare #lightupforrare #globalgenes #nord #healthequity #advocates #healthadvocate #rarediseaseawareness
Allyship isn’t about pity—it’s about power.
🛑 The rare disease community doesn’t need sympathy.
✅ We need advocates in business, healthcare, and policy.
✨ Speak up.
✨ Challenge outdated policies.
✨ Demand inclusion.
💬 Comment below: What’s ONE way workplaces can support people with rare diseases?
🔗 Join the movement
#GoRare #AllyshipInAction #RareDiseaseRights #HealthForAll
💰 Rare diseases aren’t just a health issue—they’re an economic issue.
🚨 95% of rare diseases have no approved treatment.
🚨 Late diagnoses cost healthcare systems billions.
🚨 Families are forced to leave jobs to become full-time carers.
Businesses, policymakers, and investors can’t afford to ignore rare diseases. A world that works for rare disease patients is a world that works better for everyone.
💡 Be part of the solution. Join GO RARE (link in bio)
#GoRare #EconomicImpact #RareDisease #HealthEquity #inclusion #inclusivity #healthprogress #economicprogress #bigpharma
Why do so many rare patients go years without a proper diagnosis?
Many rare diseases aren’t all that rare, they’re rarely recognised. Patients get misdiagnosed, dismissed, and left without treatment because the system at present is failing them.
🚨 We need change. We need faster diagnoses, better education for doctors, and more research funding.
This doesn’t only affect those with a rare disease. If faster diagnoses were made, more streamlined treatment plans can be put in place, meaning better use of our public healthcare.
Everyone should care about rare.
💡 Join GO RARE and demand better: /
#GoRare #RarelyRecognised #DiagnosisMatters #RareDisease #rarediseaseday2025 #rarediseaseday2025💜💚💙💛❤️ #rarediseaseday2025💜💚💙 #representationmatters #inclusivity #careaboutrare #diagnosticodyssey #diagnosticodysseydemystified #healthcare #healthcareforall
📣 Rare diseases aren’t rare, and sadly, neither is ignorance about them.
1 in 17 people will be affected, but most won’t hear about rare diseases until it’s personal.
🚨 Underfunded research
🚨 Delayed diagnoses
🚨 Families fighting alone
This isn’t just a health issue—it’s a human rights issue. Join us. Stand with the rare disease community.
💬 Drop a 🦓 if you’re with us!
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#GoRare #RareDiseaseDay #JoinTheHerd #MakeRareRecognisable #careaboutrare #rarediseaseday #rarerevolution #rarediseasestory #rarediseaseawareness #medicalmom
Last night was our very first @goraredisease event ✨
A Christmas benefit concert 05.12.24
We raised over £4k!
But more important than any financial figure is the awareness we can raise.
Our mission has always been to bring rare to the common consciousness.
Let’s close the gap between rare and common!
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#raredisease #rarebearlife #careaboutrare #rareiscoming #rareisnotinvisible #rareisbeautiful #rareismany #rareismanyrareisstrongrareisproud #charityconcert #classicalmusic #charitybenefit #givingtuesday
