Great to be at #BCLLaunch today - may blackcharityleaders.org go from strength to strength:)
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ActionPFDebra
18 posts
ActionPFDebra
@ActionPf
Support Manager for @ActionPFcharity a patient organisation committed to supporting people living with pulmonary fibrosis
가입일 Nisan 2021
51 팔로잉33 팔로워
ActionPFDebra 리트윗함
23d September 2-4pm via zoom
Steve Jones@ActionPFsteve
NEW: Welsh Pulmonary Fibrosis Support Group. The Welsh NHS ILD Network and @ActionPFcharity are teaming up to run a zoom support group covering the whole of Wales. First meeting on 23 Sept with talk by Dr Ben Hope-Good. Interested? Contact steve@actionpf.org
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Earlier this summer, we held a 'Multidisciplinary round table discussion' kindly sponsored by @ActionPFcharity. Find out what we advise our ILD patients about keeping safe after lockdown ild-in.org.uk/multidisciplin…
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Oxygen can make #breathing and exercise easier, prevent or lessen complications from low #blood oxygen levels, reduce blood pressure in the right side of your #heart, and improve your sleep and sense of well-being.
#PF #PFmonth #BreathingLife #PFAwarenessMonth #pulmonaryfibrosis
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We're joining hands with @PFFORG from across the pond to raise awareness of #pulmonaryfibrosis and share patients' experiences! 🤝💙 💜
Pulmonary Fibrosis Foundation@PFFORG
Today's Portrait of PF comes from Pepe, and is in collaboration with @ActionPFcharity. In his story, he details his struggle with a persistent cough and what helps him manage it. facebook.com/pfforg
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What is IPF? Help us raise awareness and spread hope. Together we are stronger💜
Learn more about IPF: bit.ly/395r4bg
#IPFweek #PFMonth #pulmonaryfibrosis
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APF’s vision is to find a cure for pulmonary fibrosis so that everyone affected by the disease has a better future 🧪🤝
👩⚕️Donate to our research appeal: bit.ly/3dytL7M
👨💻Learn more about our current funded research projects: bit.ly/35uzyqe
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We are looking for volunteers to join our peer support team! 🤝
Through your lived experience of pulmonary fibrosis, you can help others on their journey . For more information, just send your details to support@actionpf.org
bit.ly/3ddAxON
#VolunteersWeek
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Scottish Medicines Consortium has today approved Nintedanib for fibrotic lung disease other than IPF. NICE’s decision for England (and later Wales and NI) expected September 2021. @ActionPFcharity #CurePF @lungtaskforce
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A great patient-led campaign by @ActionPFcharity @ActionPFsteve @WendyDickinson5 @louisewright1 This is good news for our patient community but lots more to be done working towards anti-fibrotic medicines being more widely available as quickly as possible twitter.com/ActionPFcharit…
Action for Pulmonary Fibrosis@ActionPFcharity
BREAKINGS NEWS: Today (28th May 2021) NICE have agreed to review its decision that currently restricts access to anti-fibrotic treatments for #IPF patients: bit.ly/3hUnbeN We will keep you updated as more information comes in. @janicelongdj @KatiePrice @michelrouxjr
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Member of EU-IPFF and want to become a skilled patient advocate? We still have room for one or two more at the advocate development program:
eu-ipff.org/news/article/i…
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Looking forward to singing session today and benefits for breathing... back by popular demand!
Action for Pulmonary Fibrosis@ActionPFcharity
Sign up to Marika’s wonderful workshop tomorrow at 2! ✨
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Great News that NICE is going to evaluate its rules on antifibrotics for IPF patients but disappointing it will take 12 months. C’MON NICE @BoehringerUK @Roche GET TOGETHER AND MAKE IT HAPPEN QUICKLY FOR PATIENTS @ActionPFcharity @NICEComms #CurePF
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ActionPFDebra 리트윗함
Great to see #PFSummit21 discuss mental health issues. Moving patient stories by @IPFthurles @dudditz67 @joepwelling and Chantal Vandendungen. #CurePF @ActionPFcharity
EU-PFF@EU_IPFF
#PFSUMMIT21 The psychological aspects of living with chronic disease - Dr. Elisabetta Balestro: "Depression and anxiety are relatively common in patients with IPF"
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“Chronic disease involves an adjustment to life not the end life”. Liam Galvin @IPFthurles talking at the #PFSummit21 session on psychological support #CurePF @EU_IPFF @ActionPFcharity
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#PFSummit21. Well informed patient advocates are essential to well-being of patients so why are we refused full access to conferences? Overzealous interpretation of rules by @EuroRespSoc + others must change. @EU_IPFF @ActionPFcharity @EuropeanLung #CurePF
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Mia-Beth has bravely shared her experience of her Grampa living with IPF to help other families feel less alone: 💜bit.ly/2OLH1fW
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