Maddy Lomas has set up our stand at #PSOGI2025! This year, PMP patient groups from 🇬🇧🇺🇸🇫🇷🇳🇱🇪🇸 unite to launch the International Barcelona Patient Manifesto, the first time our voices are heard together. Tim Brill speaks this afternoon! #PMPAwareness #AppendixCancer #RareCancer

30th Oct, #psogi2025 in #Barcelona , patient associations will present the #PatientManifesto on #PeritonealMalignancies Using #patientvoice to highlight the needs, challenges, & hopes of those living with appendix cancers. #HealthAdvocacy #GlobalCollaboration

To our incredible runners in the #RoyalParksHalf today #TeamPS - Francesco, Cardhelle, Josh, Jane, Emma, Kaelan, Andrew, Joe, Anthony, Nicola. #ThankYouRunners for every mile, step, bit of energy you’re putting in. #PMPAwareness #AppendixCancer #PseudomyxomaSurvivor

#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

We are optimistic that Jess’s Rule could make a real difference for the PMP community. Find out more: www.gov.uk/.../jessica-.... #JesssRule #PMPAwareness #RareCancer #AppendixCancer #EarlyDiagnosisMatters #PseudomyxomaSurvivor

“How are you doing?” can be overwhelming, the answer might be complicated/exhausting to explain. “How was your day?” allows space for the good/hard, without pressure. Words matter, compassion lives in subtleties. #PMPAwareness #RareCancer #AppendixCancer #PseudomyxomaSurvivor

Two different trials that may offer alternative treatments for PMP🤞in the future. We’ll keep you updated as more information emerges on either trial. #PMPAwareness #AppendixCancer #PseudomyxomaSurvivor #BromAcTrial #PIPACTrial #RareCancerResearch

Jane & Emma are running #RoyalParksHalf, 12 Oct, #InMemory of Jane's Mum who died from PMP. Thank you for doing this & honouring your mum. Support them here - www.justgiving.com/page/kate-bo... #teamjane #PMPAwareness #PseudomyxomaSurvivor #FundraisingForHope #RunForACause #TeamJane

This is a major step forward in the long journey towards new treatment possibilities for PMP. 🤞 #Pseudovax #PMPAwareness #AppendixCancer #PseudomyxomaSurvivor #ResearchMatters #ClinicalTrials #HopeThroughResearch

To everyone affected by appendix cancer & PMP: we see your strength. We’re with you & we’ll keep raising awareness not just in August, but every day after. #AppendixCancerAwareness #PMPAwareness #RareCancerCommunity #TryAgainTomorrow #EndOfAwarenessMonth #AwarenessEveryDay

At just 12 years old, Flynn is shaving his hair on 27th Sept to raise money for PS. His mum, Tracy, was diagnosed with PMP when he was only 9. 👉 Support Flynn’s fundraiser: gofundme.com/.../help-fly.... #FindYourBrave #PMPAwareness #ShaveForACause #TeamFlynn #LittleHeroBigHeart

Kay is running the Great North Run 2025 for us! A champion for PMP rehab needs, she’s helped shine a light on how vital physio + recovery support are after surgery. Let’s cheer her on! Support Kay: ajbellgreatnorthrun2025.enthuse.com/pf/kay-stand... #GreatNorthRun2025 #PMPAwareness #RunForACause

Sue is running the #GreatNorthRun2025 she is a supporter & advocate #PMPAwareness. She has hosted online #physioforPMP, helping them regain strength & confidence. #ThankYouSue ajbellgreatnorthrun2025.enthuse.com/.../sue... #AppendixCancer #PMPSurvivor #RunForACause #SupportOurSupporters

This #appendixcancerawarenessmonth, we pause to honour those we have lost to #appendixcancers #PMP. Their voices continue to echo in our hearts & actions. #Inmemory, we recommit to raise awareness, fund research, & support those living with cancer. #LifeAndLoss #PMPRemembrance

"Are there any research trials for appendix cancer/pmp?" Is one of the questions we’re asked most. Trials are limited & costly. Our supportive community allows us to fund seed-level research. You can donate here www.pseudomyxomasurvivor.org/donate/ #RareCancer #appendixcancerawarenessmonth

"When you hear hoofbeats, think horses, not zebras." A phrase medical students use to consider common diagnoses before #rarecancer. However, for some patients, this mindset can lead to misdiagnosis, sometimes it really is a zebra! #ZebraStrong #RareDiseaseAwareness #PMPZebra

PMP, a rare & complex disease, requiring specialised treatment. Early referral to an expert can make a significant difference in outcomes. Patients advocating for their own healthcare, is pivotal. #patientadvocacy #PMPExpert #pmpCare #CRSHIPEC #SpecialisedTreatment #appendixcancerawarenessmonth

There are actually differ types of #appendixcancer & #pseudomyxomaperitonei, some are more aggressive. Early diagnosis & access to specialised care make all the difference. Raise #AppendixCancerAwareness #PMPAwareness, spark conversation, & support those facing #RareCancer

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

💡 These tests are key to early detection and proper treatment planning. If symptoms persist and answers are unclear, ask about further investigations. #AugustAwarenessMonth #PMPDiagnosis #AppendixCancer #TumourMarkers #KnowTheProcess #EarlyDetectionMatters

This Appendix Cancer Awareness Month, we recognise the complex path to diagnosis. That’s why our message is simple but powerful: Trust your gut. Listening to your body can make all the difference. #PMPAwareness #AppendixCancer #AugustAwarenessMonth #KnowTheSigns #TrustYourGut

Early detection can save lives, push for answers if you have abdominal symptoms that can not be explained. #PMPSymptoms #AugustAwareness #EarlyDetectionMatters #AppendixCancerAwareness

All the way from Gibraltar... to support us! @KaelanJoyce is determined to raise awareness and funds by running the #RoyalParksHalf. We have a few places - bit.ly/45R1vYv #AppendixCancer #AwarenessIntoAction #TeamSurvivor Support Kaelan here - www.justgiving.com/fundraising/...

This is Appendix Cancer Awareness Month. Awareness without action is worthless. Real change happens when awareness leads to action. Share info, support patients & research, push for earlier diagnoses & better treatments, your involvement matters. Learn. Share. Donate. Advocate.

#Bex is doing a fantastic job for #pseudomyxomaAwareness. The BBC - www.bbc.co.uk/news/article..., & coverage on BBC Radio Cumbria & Look North. This is for the @chrishoy #TourDe4, raising funds for @PMPSurvivor. Cheer her as she rides to make a difference & inspire! #RareDiseaseAwareness #TeamBex

This August is Appendix Cancer Awareness Month—an initiative started by us in 2013. Throughout the month, we’ll be raising awareness about the disease, symptoms, diagnosis, treatment options, & what the future holds. Please share widely. #whatispmp #pmpexplained #augustawareness

This August, #PMPSurvivor #acpmpresearch #alliance82039 #pmppalsnetwork #AssocAmarape #APeritoneum stand together to increase understanding & support for people affected by appendix cancer & the related condition pseudomyxoma peritonei (PMP). #appendixcancerawarenessmonth

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

We have places but you need to be quick! The Royal Parks Half 2025, is on the 12th Oct. Would you like to run & fundraise for us? The route through London's parks has a fantastic atmosphere. @RoyalParksHalf @pmpsurvivor Apply here - www.pseudomyxomasurvivor.org/.../.

🎁🦓 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

Still have places in the Royal Parks Half 2025, 12th Oct. Would you like to run & fundraise for PS? The route through London's parks has a fantastic atmosphere, as many past PS runners would agree. More details here - www.pseudomyxomasurvivor.org/.../royal-pa...

At PSOGI Congress 2025 we are introducing a Patient Charter. Driven by Santiago Gonzalez Moreno, MD, Madrid, & Sandra Lara de Liz, #Asociacionperitoneum, in collab with #ACPMP, #Amarape, #MesotheliomaUK, #PALS, #PMPContactGroup & #pseudomyxomasurvivor. #psogi #rarecancer

Great news that the rare cancers bill passes another stage - thanks again to @drscottarthurmp.bsky.social for this. @elloydmalta.bsky.social @pmpsurvivor.bsky.social

A cancer diagnosis is unforgettable; you don't forget “I’m afraid we found cancer.” A 2003 study by Kessels found 40-80% of medical info is forgotten, & 1/2 of what is remembered is inaccurate. Write questions before appoints & bring someone to record the answers. #pseudomyxomasurvivorcharity

PS are delighted to welcome Maddy Lomas to the Board of Trustees. A PMP patient herself, she is passionate about helping younger patients navigate a cancer diagnosis. ABB is smiling, and we look forward to working with you Maddy. Susan, Anne, Clare & Tim - PS Board of Trustees.

A campaign that amplifies the work of small charities across the UK. Join PS, whether through fundraising, funding research or raising awareness, in continuing our invaluable work. #smallcharitiesweek2025 #NCVO #pseudomyxomasurvivorcharity #pseudomyxomaperitoneiawareness

Our logo may make more sense after reading this! #pseudomyxomasurvivor #pseudomyxomaperitonei #appendixcancer 😂

Being diagnosed with cancer is scary enough, imaging what PMP/appendix cancer patients feel when they hear about the current treatment for their cancer! Yet plenty of us have survived & thrived. #pseudomyxomasurvivorcharity #appendixcancerawareness #pseudomyxomaperitoneiawareness

Us humans are a complicated lot! Research indicates that patients often delay discussing their most pressing health concerns during a visit to their doctor. It can be the last thing mentioned as they walk to the door! #pseudomyxomasurvivor #appendixcancer #pseudomyxomaperitonei

Research indicates that patients often delay discussing their most pressing health concerns during a visit to their doctor. It's usually the thing that they mention on their way out of the consultation! #pseudomyxomasurvivor #appendixcancer #pseudomyxomaperitonei

PMP tumours grow & burst through the wall of the appendix into the abdominal cavity. These tumours can secrete a jelly-like substance called mucin. A build up of mucin lead to the characteristic ‘jelly belly’ & compresses vital organs. #pseudomyxomasurvivorcharity #appendixcancer

PMP in its early stages has few symptoms. It starts in the appendix, more rarely, the bowel, ovary or bladder. It affects♂️&♀️of all ages. The tumour polyp grows & bursts through the wall into the abdominal cavity, this is when the patient first realises that there is a problem.

The challenge of a rare cancer that many are unfamiliar with, & we also need to master its pronunciation! Pseudomyxoma peritonei is pronounced “sue-doh-mix-oh-muh pary-ih-ton-nee-i” & often abbreviated to PMP. #pseudomyxomasurvivorcharity #pseudomyxomaperitonei #appendixcancer

A concerning trend of appendix cancer being diagnosed in younger patients. Those born in the mid 1980s 4X more likely to receive a diagnosis of ac compared to those born in the 1940s. www.acpjournals.org/doi/10.7326/... #pseudomyxomasurvivorcharity #appendixcancerawareness #pseudomyxomaperitonei

Volunteers Week concluded last week, we couldn't let it pass without acknowledging our own wonderful volunteers (too many to name!). Thank you each & every day for all that you do. #pseudomyxomasurvior #appendixcancer #pseudomyxomaperitonei #GratefulForVolunteers

Charlotte Orr, Illustrator, has been longlisted for the World Illustration Awards 2025, for her PMP hospital diary. Talking about the physical & emotional impact of PMP, it packs a punch! Congrats &🤞. #worldillustrationawards2025 #pseudomyxomasurvivor #peritonealmalignancyinstitute

Much later than we expected, here’s a snapshot of our wonderful PMP patients proudly wearing their free sweatshirts from us. We are sure you’ll agree that everyone looks fantastic in them! #raisingawarenesstogether #pseudomyxomasurvivor #pseudomyxomaperitonei #appendixcancer

The wonderful Rebecca Hind has been raising awareness of PMP including in The Telegraph, The Sun, The Mirror, The Mail, Bristol Live, and Lancs Live. She is also in the Chris Hoy Tour de 4, a demanding 90 km cycling race. You can support her here – www.gofundme.com/f/BexH-Tourde4

Our community is exceptional! Kay & Rebecca recently met to film a training session. Highlighting the significance of rehabilitation, physiotherapy, & exercise for PMP patients. Rebecca is tackling a 90km ride as part of Chris Hoy's Tour de 4. www.gofundme.com/f/BexH-Tourde4 #tourde4