#HAE #HereditaryAngioedema #RareDisease #RareDiseaseAwareness #ChronicIllness #InvisibleIllness #CaregiverLife #RareButReal #MusicIsMedicine #MentalHealthMatters #StorytellingHeals #BioNews #AngioedemaNews.com

Stay tuned for this video series—we’re excited to share powerful insights and perspectives from individuals living with rare diseases. 💙 #RareDiseaseDay #Bionews #RareVoices #RareButReal

#HAE #HereditaryAngioedema #RareDisease #RareDiseaseLife #ChronicIllness #InvisibleIllness #PatientVoices #RareButReal #BioNews #AngioedemaNews

👁 EYE-Q Answer Reveal 👁
Q: What % of all melanoma cases is ocular melanoma?
✅ A) Less than 5%
It’s rare, but the impact is real. That’s why we fight to raise awareness, fund research, and support patients every day. 💙
#ACureInSight #EyeQ #RareButReal #OcularMelanoma

🎉 How rare is ocular melanoma? 👁️
Q: What % of all melanoma cases does it represent?
A) <5%
B) 10%
C) 25%
D) 40%
🧐 Take your best guess — answer revealed tomorrow!
#ACureInSight #EyeQ #RareButReal #MelanomaAwareness

👁 EYE-Q Answer Reveal 👁
Q: What is enucleation?
✅ B) Removal of the eye
This surgery may be necessary in some OM cases. It’s a big step — but also one that saves lives and opens the door to healing. 💙
#ACureInSight #OcularMelanoma #EyeQ #RareButReal

👁 EYE-Q Answer Reveal 👁
Q: What is enucleation?
✅ B) Removal of the eye
This surgery may be necessary in some OM cases. It’s a big step — but also one that saves lives and opens the door to healing. 💙
#ACureInSight #OcularMelanoma #EyeQ #RareButReal

The 5th World Amyloidosis Day is Sunday 26 October, 2025. Please save the date.

🗓️ October 26th is World #Amyloidosis Day
A global day to raise awareness, 💬 speak out and 🤝 support patients everywhere.

📣 Save the date and help us spread the word! 🌍🧡

#WorldAmyloidosisDay #AmyloidosisAwareness #SupportAndGive #RareButReal

This story is proof that speaking up and pushing for answers matters. No one should face their rare disease journey alone.

#HereditaryAngioedema #HaeAwareness #RareDisease #PatientVoice #AdvocateForYourself #SpoonieStories #ChronicIllness #RareButReal #MedicalAdvocacy #BioNews #AngioedemaNews

Woman in hospital waiting room, looking oddly calm.

Doing my solo annual oncologist pilgrimage this morning, crossing fingers for an all-clear in Year 9 —7.5 years past my original expiration date. 😁👍
Also will mark the end of Scanxiety season for this year! #RareButReal #FuckCancer

Even during Appendix Cancer Awareness Month, we’re allowed to laugh. In fact, sometimes we need to. Here’s to strength, science, and still finding reasons to smile.
#AppendixCancerAwareness #RareButReal #LaughterIsMedicine #PMPAwareness #PseudomyxomaPeritonei #StillSmiling #AppendixCancer

In 2013, we established Augus as PMP Awareness Month. It has evolved into Appendix Cancer Awareness Month, garnering recognition from organisationss & individuals around the globe, we couldn't be more delighted. #pseudomyxomasurvivorcharity #pmpawarenessmonth #appendixcancerawareness #rarebutreal

🎁🦓 Something rare is hiding inside…
August is Appendix Cancer Awareness Month.
Stay tuned to unwrap the facts, share the stories, and help us raise awareness of this often-overlooked cancer.
#AppendixCancerAwareness #PseudomyxomaPeritonei #ZebrasNotHorses #RareButReal #UnwrapTheTruth

Graphic shows a group of people walking through a park wearing Rare but Real t-shirts. Text reads 'Rare but Real Manchester 14 September.'

💙 Walk to make a real difference in Manchester
Sarcoma is rare but it’s real. Join our 5K or 10K walk to support those affected and raise vital awareness.

📍 Heaton Park
📅 Sunday 14 September
🕙 Arrivals from 10am | Walk starts 10:30am

Sign up now: rarebutreal.org.uk/

#RareButReal

Meet Alice. Alice has NKH, and just turned 14 - a miracle after the rollercoaster of living in hospital and palliative care in her first year. Her journey with NKH has been brutal, but she's here. We fight for better futures for kids like Alice. 💛 mikaerefoundation.org #CureNKH #RareButReal

Seeing but not perceiving — that’s the reality of living with Balint’s Syndrome, a rare neurological condition that disrupts how the brain processes visual space. #RareDisease #BalintsSyndrome #NeuroVision #VisionAwareness #BrainHealth #InvisibleDisability #RareButReal

Image shows a mum, dad and baby. Text reads 'Rare but Real Manchester. 14 September'.

Join the sarcoma community in the next #RareButReal Walk in Manchester on 14 September at 10am. 💙

A huge thank you to everyone who joined us in Reading, your support and dedication made our first Rare but Real Walk unforgettable.

👉 sign up now at sarcoma.org.uk/rare-but-rea

July is Sarcoma Awareness Month!
Sarcoma is a rare cancer that affects bones and soft tissues.
Over 50 subtypes, making up only 1% of adult cancers. #SarcomaAwareness #SarcomaStrong #RareButReal #YellowRibbon #RareDisease #FightSarcoma #ziazebras #nmrare #nmraredisease #ziazebras

Did You Know? | Lipodystrophy Edition
What are adipokines—and why is leptin so important? 🧬
📺 Watch now to get the science in under a minute!
#Lipodystrophy #DidYouKnow #Leptin #Adipokines #RareButReal #LipodystrophyUnited

🎗️ July is Sarcoma Awareness Month
Sarcoma is a rare, aggressive cancer of connective tissues, often diagnosed in young adults. Early detection saves lives.
We stand with patients & are committed to advancing care.
#SarcomaAwarenessMonth #RareButReal #BrownSurgicalAssociates

Thank you to everyone who joined us in Reading for our first #RareButReal Walk. It was a fantastic day for the whole family! 💙

Our next Rare but Real Walk is taking place in Manchester on Sunday 14 September. Sign up at sarcoma.org.uk/rarebutreal

#SarcomaUK #SarcomaAwareness

Fat isn’t just storage—it’s a hormone engine. In lipodystrophy, it breaks down.
🎥 Watch the latest #DidYouKnow: Lipodystrophy Edition
#Lipodystrophy #RareButReal #FatFunction

🥬✨ Welcome to Snack Squad — where rare meets delicious
Because eating for lipodystrophy can still be flavorful, fun, and full of flavor ✨
#SnackSquad #LipodystrophyEats #TahiniDreams #ZaatarEverything #LowFatFlavor #HealthyButYum #RareButReal #CookWithLU #LipodystrophyUnited

Image of a man walking with a sunset background. Speech marks are above text that reads "Events like this aren’t just about raising funds– they’re about making the invisible visible."

Join the sarcoma community in Reading on June 29, for the first Rare But Real Walk!

📍 Prospect Park, Reading
🕙 Arrivals from 10am, walk starts at 10:30am
🚶‍♀️ Choose between 5k & 10k routes!

Sign up today at rarebutreal.org.uk/...

#SarcomaUK #RareButReal #SarcomaAwareness

Our AFM Documentary just premiered.

This disease changed our lives forever—but most still don’t know what Acute Flaccid Myelitis even is. That’s why we made this film.

Watch. Share. Help us make AFM visible.
#AFM #AcuteFlaccidMyelitis #Documentary #AFMawareness #RareButReal

Chaz Lucius - a first-round NHL draft pick - made the decision to retire from hockey after being diagnosed with Ehlers-Danlos syndrome. His story is a powerful reminder of the impact rare genetic conditions can have and the importance of getting diagnosed.
#ChazLucius #DiagnosisMatters #RareButReal

#Insulinoma
#RareDiseaseDay2025 #InsulinomaCharityUK #InsulinomaAwareness #InsulinomaSupport #MetastaticInsulinoma #IndolentInsulinoma #Hypoglycaemia #NeuroendocrineTumour #NETCancerAwareness #ICUK #RareDisease #VolunteerDriven #InsulinomaResearch #Smallcharity #Rarebutreal #rarerevolutionmagazine