@RaremarkHealth

Helping you better understand, manage and talk about rare disease. Join us at https://xitter.cf/t.co/QfQK9hoRXm

raremark.com
Joined December 2014
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#DidYouKnow? Register to attend for FREE now to enjoy: 🎙️ 50+ speakers 🌎 from over 20 countries 🌐across 6 continents findacure.org.uk/rare-diseas…
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Looking for a nice painting or artwork? Take a look at the auction below 448-455 👀 Filter category by paintings 🤞💜 Please help us fundraise for @ActionPFcharity Pulmonary Fibrosis lung disease needs a cure #art #painting #photomontage #ArtistOnTwitter live.adampartridge.co.uk/m/v…
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Receive support for your grief from people that care. Certified Caregiving Consultants will guide you through healing rituals for your individual and our collective losses. You’ll also learn how to add these rituals to your day. grief.eventbrite.com #support #caregiving
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2020 taught us that we all need a plan for an emergency. We never know what could happen that could impact the workplace, our families or both. How well is your team prepared for an emergency? Take our quick assessment: careyears.typeform.com/to/Fo…
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Feed Your Curiosity | Bruce McIntyre Best practices for family caregivers No. 4 #caregivers #caregiving #rarefamilycaregivers #NFCmonth brucemcintyre.com/2021/11/22…
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Honored to share about our Family Emergency Planning sessions and the great work of @SustainableCG, one of our Certified Caregiving Consultants, in this WSJ article. wsj.com/articles/the-new-too…

The New Tools for Helping Aging Parents

Caregivers have found valuable advice from online sources that have sprung up since the pandemic began.

wsj.com
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We’re pleased to announce the selection of our first drug candidate, BSIM 3A05D, a compound designed to address #ATTR-CM, a progressive and potentially fatal disease characterized by deposition of TTR amyloid in the heart. Full PR: bsimtx.com/news/28 #amyloidosis
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Best Practices for Family Caregivers No. 2: Welcome Tangible Help ow.ly/Ok7T50GPLpS #caregiving #caregivers #rarefamilycaregivers #NFCmonth
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Register Now for our November 9th, Webinar Featuring Drs. Goker-Alpan-Alpan and Ramaswami: New Phenotypes Developing for Lysosomal Storage Diseases. @LDRTC_USA @lsdorgsa @WORLDSymposia @NGF_Gaucher @IGAgaucher @GaucherDisease us06web.zoom.us/webinar/regi…
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Some #caregiving victories are larger than they may initially seem: ow.ly/bvIp50GEipK @BruceMcIntyre2 via @RaremarkHealth
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Register Now for our Nov 9 Webinar Featuring Drs. Goker-Alpan-Alpan and Ramaswami: New Phenotypes Developing for Lysosomal Storage Diseases @TUAFD1 @FabryDisease1 @FabryOrg @pompecanada @AlliancePompe @pompeindia @MPSawareness @Sanfilippo_RM @mpssuperhero us06web.zoom.us/webinar/regi…
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*Please note that this film discusses child loss* Today during #BLAW we are launching 'You're not Alone'. You can view the full length short film and exhibition at lnkd.in/gakAdziX #blaw2021 @illumina @jpcs_limited #NationalLottery @soft_uk #RareDisease
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Join us for a Facebook LIVE event on Friday, September 24, 2021 as we aim to raise 50k for research and replay some sessions from our recent conference! You do not need a Facebook account to watch! Just visit facebook.com/Dup15qAlliance/! #Dup15q #Believe #50kForConferenceReplay
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Today is #GBMDay! With #Oncology, #RareDisease, and #OrphanDrugDevelopment at the forefront of our #ClinicalResearch, our team is both passionate and committed to finding cures to #Glioblastoma and #BrainTumors. #Ergomed #GeneTherapy #GlobalCRO
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1 thing Daisy was surprised by when she joined the team.... 👀 #workanniversary #anniversary #years #congratulations #thankyou #grateful #workcelebration #employeeappreciation #journey #business #yearanniversary #workfamily #raredisease #awareness #charity @findacure_fdn
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Next week on Monday, July26th at 5:30 PM EST we will be having our next World of Rare Disease Facebook Live. We will be focusing on Chronic Granulomatous Disease #raredisease ow.ly/KemO50Fwb3n
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With an incidence rate of every 1 in 1 million births, FOP is considered a rare disease. Join in the challenge and Raise-A-Leg for FOP. It's easy! Get your loved ones involved too #tuesdaytakeover
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Raremark retweeted
Andrew Kaczynski
@KFILE6 May 2021
Thank you on #NationalNursesDay to all the amazing nurses at @BostonChildrens Hospital who were for us every step on the way during our daughter’s cancer. I will never forgot the kindness and empathy show in our worst moments. The laughs in our best. And everything in between.
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For those that missed the Raremark discussion, I had with Dr. Toby Maher the link follows. @TobyMMaher is just a fantastic Pulmonologist, Educator, and ILD Researcher. What an honor and joy to share the spotlight with him. One of t…lnkd.in/gtBxig4 spoti.fi/3sNJLJ1
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#RAREfest20 On Demand Poster # 3: @NiemannPickUK Watch 'Go Make Memories' - an extremely moving time lapse film illustrating the impact of #NiemannPickDisease - aiming to raise awareness of this ultra-rare & devastating life limiting group of genetic conditions. #RareDisease
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