At the same time as deciding not to issue guidance to schools the DfE was referring to materials from LCK as misinformation.
This allegation is unexplained, unfair and untrue.
"The misinformation was hiding the facts from families"
@sammiemc.bsky.social
#PatientAdvocacy #LongCovidKids
This allegation is unexplained, unfair and untrue.
"The misinformation was hiding the facts from families"
@sammiemc.bsky.social
#PatientAdvocacy #LongCovidKids
October 23, 2025 at 1:14 PM
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5 reposts
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🦓 Many people affected by #raredisease also suffer from #invisibledisabilities in #NewMexico.
This week, it's important not only to #seetheinvisible but also to hear it!
#RDAC #patientadvocacy
#nmleg #nmpol #nmrare #nmraredisease #raredisease #showyourstripes #ziazebras
This week, it's important not only to #seetheinvisible but also to hear it!
#RDAC #patientadvocacy
#nmleg #nmpol #nmrare #nmraredisease #raredisease #showyourstripes #ziazebras
October 24, 2025 at 4:06 PM
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💉 U.S. healthcare: where getting a checkup can feel like applying for a mortgage. 🏦💊
Insurance? Confusing. Bills? Surprising. Stress? Guaranteed.
Pro tip: keep records, ask questions, and don’t let the system win. 💛
#Healthcare #USHealth #PatientAdvocacy #SpoonieLife
Insurance? Confusing. Bills? Surprising. Stress? Guaranteed.
Pro tip: keep records, ask questions, and don’t let the system win. 💛
#Healthcare #USHealth #PatientAdvocacy #SpoonieLife
October 18, 2025 at 5:53 PM
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It's not "coming" for our pets. It's already here. #vetsky #vetmed #pets #animals #cats #dogs #veterinary #capitalismkills #patientsoverprofits #patientadvocacy #corporate #corporations #Banfield #MarsPetcare #VMA #BluePearl #capitalism #revenue #VETMEDISBROKEN
“The video paints a troubling picture for pets and the people who love them: fewer independent options, rising prices for routine and emergency visits, and growing pressure on veterinarians to meet corporate revenue targets.”
Private Equity Is Coming for Your Pets : What it means for you
Cats have nine lives – and private equity is betting that pet owners will paw up big bucks to save every last one of them. More Perfect Union’s recent video “Private Equity Is Coming for Your Pets”…
pestakeholder.org
October 15, 2025 at 2:18 PM
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Why health self-advocacy is an essential life skill
Health self-advocacy is a critical life skill for navigating a complex system. Learn the eight pillars, from health literacy to preparing for visits, to improve your care.
kevinmd.com
October 11, 2025 at 10:16 PM
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Community Conversations on Mental Health 🧠
📅 Date: Friday, 10 October | 3-4pm CEST
📍 Format: Teams Webinar
📲 Register here: events.teams.microsoft.com/event/e74515...
#RareDiseases #RDI #MentalHealth #GlobalHealth #PatientAdvocacy #Community
📅 Date: Friday, 10 October | 3-4pm CEST
📍 Format: Teams Webinar
📲 Register here: events.teams.microsoft.com/event/e74515...
#RareDiseases #RDI #MentalHealth #GlobalHealth #PatientAdvocacy #Community
October 7, 2025 at 12:09 PM
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This case isn’t just about one family’s loss; it’s a wake-up call for the entire healthcare system. 🚨 We must demand better for our loved ones & prioritize patient safety above all else. 🩺❤️ #InnovationInHealthcare #PatientAdvocacy 🧵
October 7, 2025 at 3:21 PM
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CA RESIDENTS!!: Now is the time to contact Governor Newsom & urge him to SIGN AB 867 INTO LAW! #California #cats #animalwelfare #veterinary #vetsky #pawsneedclaws #declawingiscruel #animalcruelty #ethics #patientadvocacy #donoharm #vetmed
🚨 IT’S ALMOST OFFICIAL 🚨
California is this close to a statewide ban on cruel declaw procedures. ✊🐾 AB 867 has passed the Senate and Assembly and is now on Governor Newsom’s desk.
This is the FINAL step to victory for cats across California. Let’s make history together. 💙🐱
California is this close to a statewide ban on cruel declaw procedures. ✊🐾 AB 867 has passed the Senate and Assembly and is now on Governor Newsom’s desk.
This is the FINAL step to victory for cats across California. Let’s make history together. 💙🐱
October 2, 2025 at 2:20 PM
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3 likes
Before appointments: list meds and doses, write your top three questions, bring a note taker, snap photos of labels, and ask for plain-language summaries. After, hydrate and rest. Share one question you plan to ask at your next visit. #oncsky #cansky #PatientAdvocacy You matter. Ground now: breathe.
September 27, 2025 at 6:01 AM
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5 likes
Ever left a doctor's appointment feeling rushed, ignored, or like you have to prove your pain? That frustration many experience living with chronic pain can feel overwhelming. #chronicpain #healthcare #patientadvocacy #painmanagement #listenup
cellrive.com/what-to-do-i...
cellrive.com/what-to-do-i...
September 21, 2025 at 10:15 PM
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Misdiagnosis is one of the biggest challenges people with chronic illness face — and it often delays real treatment and care.
Drop it below ⬇️ — your story could help someone else keep pushing for answers.”
#ChronicIllness #Misdiagnosis #PatientAdvocacy
Drop it below ⬇️ — your story could help someone else keep pushing for answers.”
#ChronicIllness #Misdiagnosis #PatientAdvocacy
August 24, 2025 at 6:01 PM
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Critical discussions in Maryland reveal the stark reality of African American women facing barriers to timely breast cancer care—are their voices being heard?
Click to read more!
#MD #CitizenPortal #MarylandBreastCancer #EquitableCare #HealthDisparities #PatientAdvocacy
Click to read more!
#MD #CitizenPortal #MarylandBreastCancer #EquitableCare #HealthDisparities #PatientAdvocacy
Panel addresses concerns of early breast cancer diagnoses among Black women
Testimony highlights lack of response from PDAB to breast cancer patient concerns
citizenportal.ai
February 7, 2025 at 6:15 AM
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Tamika Johnson's heartfelt testimony about her battle with metastatic breast cancer reveals the urgent need for timely healthcare access that could save lives in Maryland.
Click to read more!
#MD #MarylandHealthcare #CitizenPortal #LegislativeReform #PatientAdvocacy #HealthcareAccess
Click to read more!
#MD #MarylandHealthcare #CitizenPortal #LegislativeReform #PatientAdvocacy #HealthcareAccess
Tamika Johnson advocates for timely cancer treatment access in Maryland committee hearing
Tamika Johnson emphasizes need for timely access to cancer treatments as a patient advocate.
citizenportal.ai
February 7, 2025 at 6:14 AM
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Are you a #cancer Patient, Research, Policy or Community advocate? Are you a person diagnosed w/ (or history of) cancer interested in advocacy but not sure where to start? We need your voice & would love to have you join us! #Cansky #oncosky #patientadvocacy
advocatecollaborative.org/join-us/
advocatecollaborative.org/join-us/
December 6, 2024 at 4:24 PM
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2 reposts
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#Psychedelics & #Cannabis #Educational #News
#marijuana #canada #usa #germany #opiodreduction #productrecall #patientadvocacy #marijuananews
youtube.com/live/3w3I52R...
#marijuana #canada #usa #germany #opiodreduction #productrecall #patientadvocacy #marijuananews
youtube.com/live/3w3I52R...
P.A.C.E. News - Feb 6-25
YouTube video by PACE Radio Network
youtube.com
February 6, 2025 at 11:38 PM
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Get ‘em while you still can #oncosky #patientadvocacy
NCCN Mobile Apps
www.nccn.org
February 5, 2025 at 4:08 AM
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The EU-PFF Patient Advocacy Forum #PFForum25 gathered advocates, experts & partners in Frankfurt from 24–27 April to strengthen the patient voice in #PulmonaryFibrosis. Patvocates is proud to have supported the forum which focused on collaboration & advocacy. #PatientAdvocacy #LungHealth #EUPFF
May 2, 2025 at 12:28 PM
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📢 Big news [email protected] for 2025! Download & listen to this #OMBCL chat with founder Josh Newby about what’s ahead. #BCMHouston #metavivor #mbcalliance #sitemancancer
🎧 Listen (all channels) or 🔗 buff.ly/oKyIj8H
#MBC #research #PatientAdvocacy #science #BCSM #CanSky
🎧 Listen (all channels) or 🔗 buff.ly/oKyIj8H
#MBC #research #PatientAdvocacy #science #BCSM #CanSky
April 2, 2025 at 10:07 PM
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3 reposts
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➡️ Register now: BlackPeopleLikeMe.com
Special thanks to Genentech for providing funding support to make this webinar possible.
#BlackPeopleLikeMe #FoodAllergyAwareness #FoodAllergies #RepresentationMatters #AllergyAwareness #PatientAdvocacy #BPLM
Special thanks to Genentech for providing funding support to make this webinar possible.
#BlackPeopleLikeMe #FoodAllergyAwareness #FoodAllergies #RepresentationMatters #AllergyAwareness #PatientAdvocacy #BPLM
BlackPeopleLikeMe.com
May 19, 2025 at 4:35 PM
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“My symptoms were blamed on anxiety.”
Raquel was 33 when she was diagnosed with terminal colorectal cancer—years after her symptoms were dismissed.
#CancerSurvivorMonth #ColorectalCancer #PatientAdvocacy #InspirationForCancer #TrustYourBody #CancerAwareness #MedicalBias #YoungAdultCancer
Raquel was 33 when she was diagnosed with terminal colorectal cancer—years after her symptoms were dismissed.
#CancerSurvivorMonth #ColorectalCancer #PatientAdvocacy #InspirationForCancer #TrustYourBody #CancerAwareness #MedicalBias #YoungAdultCancer
“My Symptoms Were Blamed on Anxiety”: A Cancer Survivor’s Story of Self-Advocacy — HuMOLYTE
During Cancer Survivor Month, we spotlight Raquel, a 33-year-old woman whose terminal colorectal cancer was initially misdiagnosed as anxiety. Her journey highlights the importance of self-advocacy, s...
www.humolyte.com
June 25, 2025 at 3:23 PM
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Here's the Top 10 Trending Words over the Past 10 Minutes:
️⚠️🌀1 - franz
️⚠️🌀1 - beckenbauer
️⚠️🌀1 - bauern
4th - kaiser
5th - borne
6th - copyright
7th - consumers
8th - theft
9th - households
10th - www.gsdiandadvocacy.co.uk/the-next-sup
(tap or click a word to see all posts with that word!)
️⚠️🌀1 - franz
️⚠️🌀1 - beckenbauer
️⚠️🌀1 - bauern
4th - kaiser
5th - borne
6th - copyright
7th - consumers
8th - theft
9th - households
10th - www.gsdiandadvocacy.co.uk/the-next-sup
(tap or click a word to see all posts with that word!)
January 8, 2024 at 5:40 PM
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A strong reminder that #Appeals are a critical means of #PatientAdvocacy #DenialsofCare #Delays harm patients www.healthleadersmedia.com/payer/deny-a...
Deny and Delay? California Seeks Penalties for Insurers that Repeatedly Get It Wrong
Experts say it could be one of the boldest attempts in the nation to rein in health insurer denials, before and after care is given.
www.healthleadersmedia.com
February 20, 2025 at 12:57 PM
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REMINDER to @advocatecollab.bsky.social members:
Please join us tomorrow 3/6 at 10amPT/1pmET for a presentation by Karen Merritt on the DPYD gene and the value of, and the need for, DPD deficiency testing before fluoropyrimidine chemotherapy #CanSky #OncSky #PatientAdvocacy
Please join us tomorrow 3/6 at 10amPT/1pmET for a presentation by Karen Merritt on the DPYD gene and the value of, and the need for, DPD deficiency testing before fluoropyrimidine chemotherapy #CanSky #OncSky #PatientAdvocacy
March 5, 2025 at 10:29 PM
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Any questions for Dr. Alan Balch? Send us your questions and get answers in our monthly "Ask an Expert" series! #PatientAdvocacy #CancerCare
Have questions about #healthcare navigation, #MedicalBills, or #PatientRights? Dr. Alan Balch, CEO of National Patient Advocate Foundation, is ready to answer. Send your questions to us via DM by April 13. Follow us for more upcoming Q&A posts with our cancer experts! #CancerCare #PatientAdvocacy
April 11, 2025 at 4:27 PM
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The NHS isn’t the enemy—but it’s not off-limits to feedback. Especially when you’re living with complex conditions.
Here’s how to complain without burning bridges (or toast).
#EDS #Chiari #POTS #NHS #PatientAdvocacy #EDS&Chiari #UnremarkableMe #ChronicIllness
www.unremarkableme.com/post/so-you-...
Here’s how to complain without burning bridges (or toast).
#EDS #Chiari #POTS #NHS #PatientAdvocacy #EDS&Chiari #UnremarkableMe #ChronicIllness
www.unremarkableme.com/post/so-you-...
How to Complain (Constructively) When the NHS Gets It Wrong
By Antonia @ Unremarkable Me | Published June 2025Let’s be honest: complaining about the NHS can feel a bit like yelling at your nan for burning the toast. You love her. She means well. But sometimes—...
www.unremarkableme.com
June 13, 2025 at 8:41 AM
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