#Cancer52BigConversation, #rarecancers charities discussing UK cancer policy. The State of the Nation Report: No Cancer Too Rare, holding the government accountable & improvements for patients.
Full report: e2236186-a9de-45db-b8f6-3f2d6db40cb4.usrfiles.com...
#Cancer52 #PseudomyxomaSurvivor
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
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
Our logo may make more sense after reading this! #pseudomyxomasurvivor #pseudomyxomaperitonei #appendixcancer 😂
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
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
Lizzie Little shars her TEDx video with us from her hospital bed in Sydney, Australia, having undergone a 5th peritonectomy for PMP. It talks about PMP, death, & universal themes about living life, through adversity.
Sharing it here;
youtu.be/YnWOVfn2z_I
#pseudomyxomasurvivor
Congratulation to all parties involved in bringing rare cancers to the table.
@DrScottArthurMP
@AshleyDalton_MP
#pseudomyxomasurvivor #cancer52 #nationalvoices #rarecancerawareness #rarecancercharity
Today, on Rare Disease Day 2025, we have recorded a special episode with Faye Louise, who has a series of PMP podcasts helping to raise awareness of this rare cancer.
#rarediseaseday2025 #pseudomyxomasurvivor #wearyourstripes #reallifestories
open.spotify.com/episode/6uM8...
Rare Disease Day, launched in 2008, with activities in 18 countries. This day has grown significantly, featuring events in over 100 countries by 2024. We has been an active participant since 2011.
#rarediseaseday2025 #pseudomyxomasurvivor #pseudomyxomaperitonei #appendixcancer
Rare Disease Day takes place on Feb 28 (or Feb 29 in leap years)—the rarest day of the year. This is organised by EURORDIS with over 65 national alliance patient organisations, we are 1 of them.#rarediseaseday2025 #pseudomyxomasurvivor #pseudomyxomaperitonei #appendixcancer
Since 2008, Rare Disease Day has been pivotal in fostering a global community focused on rare diseases. We has embraced this mission since 2011, the year PS was founded.
#rarediseaseday2025 #pseudomyxomasurvivor #pseudomyxomaperitonei #appendixcancer
Countdown to Rare Disease Day. An initiative which aims for equity in social opportunities, healthcare, access to diagnoses & treatments for all affected. A mission fully supported by us.
#RareDiseaseDay2025 #pseudomyxomasurvivor #pseudomyxomaperitonei #appendixcancer
We love that a permanent memorial plaque in honour of Audrey Hepburn, who died of pseudomyxoma peritonei in 1993, is to be erected in London's Mayfair. #pseudomyxomasurvivor #audreyhepburn #rarecancer
news.sky.com/story/audrey...
We are funding AI research @BasingstokePmi. Predicting PMP disease recurrence & survival, improve patient care & refine primary treatment protocols. Tim Brill, PS Trustee, surgeon Mr Mark Vasanth, Dr Sophia Stanford, Lead Research Scientist
#pseudomyxomasurvivor #appendixcancer
Peritoneal malignancies are appearing in younger patients. Are they receiving written resources during preoperative medical visits? Is counselling being offered? Important questions to ask. Link to article - www.sciencedirect.com/.../pii/S002... #pseudomyxomasurvivor #pseudomyxomaperitonei
We are currently backing a funding proposal aimed specifically at exploring diets for PMP patients. Given that this a rare cancer, it would be remarkable to shine a light on our needs. Keeping our fingers crossed! 🤞🏻 #pseudomyxomasurvivor #pseudomyxomaperitonei #appendixcancer
We trust you have found our series on diet for cancer patients informative & it has opened a conversation on the subject. Let your healthcare professional know if you are considering a specific diet.
#pseudomyxomasurvivor #BDA_dieticians #pseudomyxomaperitonei #appendixcancer
Those with a low BMI, eating disorders, heart disease or diabetes are advised not to risk short-term fasting due to a lack of strong evidence. Check with yr oncology team before taking any supplements. #pseudomyxomasurvivor #bda_dieticianssh #pseudomyxomaperitonei #appendixcancer
We have been running a series on cancer diets & myths, with our information being supplied by @BDA_dieticians. Today's subjects are alkaline & ketogenic diets, both complex areas to discuss. #pseudomyxomasurvivor #BDA_dieticians #pseudomyxomaperitonei #appendixcancer
We have been running a series on cancer diets & myths, with our information being supplied by @BDA_dieticians. Today's subjects are alkaline & ketogenic diets, both complex areas to discuss. #pseudomyxomasurvivor #BDA_dieticians #pseudomyxomaperitonei #appendixcancer
We have been running a series on cancer diets & myths, with our information being supplied by @BDA_dieticians. Today's subjects are alkaline & ketogenic diets, both complex areas to discuss. #pseudomyxomasurvivor #BDA_dieticians #pseudomyxomaperitonei #appendixcancer
Continuing our series on cancer diets and myths. Today we start with some myths. #pseudomyxomasurvivor #britishdieteticassociation #pseudomyxomaperitonei #appendixcancer
To navigate cancer treatment, understanding the distinction between complementary & alternative diets is crucial. Open discussions with medical professionals, & with support from family/friends, ensure your decisions are informed. #pseudomyxomasurvivor #britishdieteticassociation
