Today is our 1st #birthday! It’s been an amazing year establishing & growing a #community of #inclusivity in #aorticdissection. Like everyone, the past year has been trying. But we're reflecting on the highlights of what has been achieved so far. Please read on 🧵👇
We spoke at 25+ events on a mission to update & spread #AortaEd across the patient pathway. Partnering with @OFFICIALWMAS @ParamedicsUK @nhsswft @bsms_ctss @SCTSUK @cpdme @AssocEmergMedIE @NCAlliance_NHS @RCollEM @EuropSocEM @acutemedicine @CDDFTNHS +more
#Podcasts are easily accessible #FOAMed, especially for teams on the road. We focused on reaching pre-hospital where swift AD diagnosis & management will prevent unnecessary deaths.
👏 @TheCaseReport @GenBroadCAST @SecondarySurvey for championing this!
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Created the AD Research Advisory Group consisting of highly regarded medical researchers inc @Colinbicknell @julessanders2 @mraungoo & 4 patient/relative members.
A research panel of 250, introduced the first #research fund dedicated to AD @surgicalMIC
Formed collaborations with @sheffielduni @imperialcollege @LHCHFT @BartsHospital @VascResearchNet @JohnRitterFdn @McGovernMed @EdinUniCVS @BrJCardiol & more to drive new AD #research projects. Improving the care of those with & at risk of the condition.
On #aorticdissectionawarenessday Sep 19th we launched the AD Field Guide for #primarycare in partnership with @PCCS_UK.
So far downloaded over 500 times, while the print version has made it as far as New Zealand & Canada
We were invited to educate and share the patient perspective of AD on a variety of platforms. From @theJeremyVine @BBCRadio2 reaching 7 million listeners through to lightning up @LichfieldCath @WinCathedral with the help of @luxmuralis
We had a tremendous amount of positive feedback while supporting the acute AD toolkit project.
@NHSEngland has been astonished by the response of the charity’s supporters stating "this has been one of our most successful patient & public involvements"
It’s been a privilege to work with so many patients & families impacted by AD. Honoured to have the input & collaboration of @WhisperingBob as ambassador & founding patient of the charity. Shaping a #patientcentred future together. #aorticwarrior!
And also the welcoming support of the charities and organisations that represent all of those at risk and impacted by AD in the #RareDisease community @rarediseaseuk @RareDiseasesIE @GeneticAll_UK @SWAN_UK @AJsChallenge @RareBeacon
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We’ve been blown away by the level of donations & fundraiser support. These amazing people include @JoanneLJackson @hii_jessxx @skiwrite @ibuildrunners
All money raised goes directly to our AD work into education, patient support, research & policy change.
In everything we do, we remember those who lost their lives to AD. And this is our driving motivation to change current outcomes & save lives. Working with The Coroners' Society of England & Wales @OrgCCSS @NAFD_UK @ptsafetyNHS @ptsafetylearn @hsib_org
As a new charity, we are very lucky to have a founding team that brings influence to make our drive for change possible! With @GrahamTADCT highly regarded within the medical community & @Pauline_Latham with direct access to @DHSCgovuk policy change.
And of course, campaigning for change has been at the bedrock of all that we do thanks to the dedication and commitment of Catherine who has been representing families who have lost loved ones to AD.
There is so much planned for the next 12 months! Exciting announcements of new resources, new events with riveting speakers & new research studies that will transform the care for anyone impacted by AD.
Follow us or join the AD updates mailing list bit.ly/AD-signup
What a great year it's been for driving positive change!
Thank you for your warm welcome, your ongoing support, your engagement & for being on this journey to shape a safer future.
Together we will make a difference & deliver the much-needed change.
@AorticDissectCT x
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