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
Also will mark the end of Scanxiety season for this year! #RareButReal #FuckCancer
August 21, 2025 at 12:48 PM
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
Also will mark the end of Scanxiety season for this year! #RareButReal #FuckCancer
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
July 21, 2025 at 8:44 PM
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
#Insulinoma
#RareDiseaseDay2025 #InsulinomaCharityUK #InsulinomaAwareness #InsulinomaSupport #MetastaticInsulinoma #IndolentInsulinoma #Hypoglycaemia #NeuroendocrineTumour #NETCancerAwareness #ICUK #RareDisease #VolunteerDriven #InsulinomaResearch #Smallcharity #Rarebutreal #rarerevolutionmagazine
#RareDiseaseDay2025 #InsulinomaCharityUK #InsulinomaAwareness #InsulinomaSupport #MetastaticInsulinoma #IndolentInsulinoma #Hypoglycaemia #NeuroendocrineTumour #NETCancerAwareness #ICUK #RareDisease #VolunteerDriven #InsulinomaResearch #Smallcharity #Rarebutreal #rarerevolutionmagazine
February 22, 2025 at 1:30 AM
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
#AppendixCancerAwareness #RareButReal #LaughterIsMedicine #PMPAwareness #PseudomyxomaPeritonei #StillSmiling #AppendixCancer
August 20, 2025 at 10:01 AM
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
#AppendixCancerAwareness #RareButReal #LaughterIsMedicine #PMPAwareness #PseudomyxomaPeritonei #StillSmiling #AppendixCancer
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
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
July 8, 2025 at 1:39 PM
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
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
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
#ChazLucius #DiagnosisMatters #RareButReal
April 10, 2025 at 7:32 PM
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
#ChazLucius #DiagnosisMatters #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
July 24, 2025 at 9:18 AM
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
A huge thank you to everyone who joined us for our #RareButReal Walk in Glasgow last weekend! 💙
It was a fantastic day filled with community spirit, as dedicated supporters came together to raise vital awareness of sarcoma.
Find out more at rarebutreal.org.uk/.
It was a fantastic day filled with community spirit, as dedicated supporters came together to raise vital awareness of sarcoma.
Find out more at rarebutreal.org.uk/.
June 12, 2026 at 9:00 AM
A huge thank you to everyone who joined us for our #RareButReal Walk in Glasgow last weekend! 💙
It was a fantastic day filled with community spirit, as dedicated supporters came together to raise vital awareness of sarcoma.
Find out more at rarebutreal.org.uk/.
It was a fantastic day filled with community spirit, as dedicated supporters came together to raise vital awareness of sarcoma.
Find out more at rarebutreal.org.uk/.
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
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 12, 2025 at 10:00 AM
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
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
#HAE #HereditaryAngioedema #RareDisease #RareDiseaseLife #ChronicIllness #InvisibleIllness #PatientVoices #RareButReal #BioNews #AngioedemaNews
August 28, 2026 at 2:02 PM
After Georgie was told her uterine leiomyosarcoma was incurable, she and her wife Adel became determined to help others affected by sarcoma.
Join them for #RareButReal Maidstone on 6 September at Mote Park. 💙
Visit rarebutreal.org.uk/
Supported by Deciphera Pharmaceuticals.
Join them for #RareButReal Maidstone on 6 September at Mote Park. 💙
Visit rarebutreal.org.uk/
Supported by Deciphera Pharmaceuticals.
August 26, 2026 at 10:00 AM
After Georgie was told her uterine leiomyosarcoma was incurable, she and her wife Adel became determined to help others affected by sarcoma.
Join them for #RareButReal Maidstone on 6 September at Mote Park. 💙
Visit rarebutreal.org.uk/
Supported by Deciphera Pharmaceuticals.
Join them for #RareButReal Maidstone on 6 September at Mote Park. 💙
Visit rarebutreal.org.uk/
Supported by Deciphera Pharmaceuticals.
A huge thank you to Stevie and everyone who joined a special #RareButReal Walk in memory of David 💙
70 people, and one dog, walked 5km through Bishop Auckland to celebrate his life and raise awareness of sarcoma.
Inspired? Plan your own walk: rarebutreal.org.uk/
70 people, and one dog, walked 5km through Bishop Auckland to celebrate his life and raise awareness of sarcoma.
Inspired? Plan your own walk: rarebutreal.org.uk/
August 18, 2026 at 9:00 AM
A huge thank you to Stevie and everyone who joined a special #RareButReal Walk in memory of David 💙
70 people, and one dog, walked 5km through Bishop Auckland to celebrate his life and raise awareness of sarcoma.
Inspired? Plan your own walk: rarebutreal.org.uk/
70 people, and one dog, walked 5km through Bishop Auckland to celebrate his life and raise awareness of sarcoma.
Inspired? Plan your own walk: rarebutreal.org.uk/
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
February 3, 2026 at 3:04 PM
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
💙 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
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
July 24, 2025 at 10:00 AM
💙 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
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
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
Our next Rare but Real Walk is taking place in Manchester on Sunday 14 September. Sign up at sarcoma.org.uk/rarebutreal
#SarcomaUK #SarcomaAwareness
June 30, 2025 at 2:30 PM
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
Our next Rare but Real Walk is taking place in Manchester on Sunday 14 September. Sign up at sarcoma.org.uk/rarebutreal
#SarcomaUK #SarcomaAwareness
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
📍 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
May 20, 2025 at 7:00 AM
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
📍 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
👁 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
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
December 20, 2025 at 5:02 PM
👁 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
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
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
December 19, 2025 at 3:04 PM
🎉 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
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
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
December 6, 2025 at 8:59 PM
👁 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
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
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
December 6, 2025 at 3:02 PM
👁 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
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
🗓️ 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
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
October 24, 2025 at 1:02 PM
🗓️ 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
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
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
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
fb.watch
April 13, 2025 at 9:12 PM
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
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
#teamPS at the #RCGPAC25, #raisingawareness among 2,400 GPs. Maddy, Anne & Jo are ready to start conversations, share stories, & help frontline medical professionals recognise our ultra-rare cancer sooner.
#AppendixCancer #PseudomyxomaSurvivor #RareButReal #EarlyDiagnosisMatters
#AppendixCancer #PseudomyxomaSurvivor #RareButReal #EarlyDiagnosisMatters
October 10, 2025 at 9:57 AM
#teamPS at the #RCGPAC25, #raisingawareness among 2,400 GPs. Maddy, Anne & Jo are ready to start conversations, share stories, & help frontline medical professionals recognise our ultra-rare cancer sooner.
#AppendixCancer #PseudomyxomaSurvivor #RareButReal #EarlyDiagnosisMatters
#AppendixCancer #PseudomyxomaSurvivor #RareButReal #EarlyDiagnosisMatters
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
August 1, 2025 at 8:33 PM
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