Living Well Symposium
StokeTownHall,Stoke-on-Trent,UK
March7th2025
Whatdoesitmeanto“livewell”withararedisease?Shouldthisbedeterminedbyaccessto aspecialistmedicalteam,orthroughhavingoneofthe5%ofconditionswherealifechangingtreatmentisindevelopmentoravailable? Treatmentaccessisvitalbutarethe vastmajorityforwhomthisisnotacurrentrealitybeingempoweredtolivewelltoday?And isaccesstotreatmentfairlydeliveredfortherarediseasecommunity?Weinviteyoutojoin ustojoinuasatoursymposium,theinauguraleventfortheLivingWellMovement,a campaignwithtwogoals:
living well movement: goals
“LivingWell”definedbytherarediseasecommunityandforthesedefinitionstobe reflectedinrarediseasepolicy. Rarediseasecommunitytounderstandandadvocatefortheirrightsunderthe EqualityAct2010.
Weknowthatlivingwelltodaymatters;thiseventhasbeeninspiredbytheraredisease communityandshapedbyresearch.In2023MetabolicSupportUKundertookthefirst qualitativeresearchintowhatlivingwell-or‘qualityoflife’-meanstoourraredisease community,notwhatwearetolditisbythesystemsthatsurroundus.Thisresearch ThoughtsintoActiontoldusthathavingaccesstoeducation,joy,employment,andpositive personalidentityarekeytolivingwelltoday.
TheLivingWellsymposiumisacuratedspacedesignedtobringrarediseaseadvocates togethertoplacegreaterfocusonhowweembedlivingwellinoursociety,laws,andpolicy. Ouragendaisdesignedtoeducate,empower,andinvigoratetherarediseasecommunity onthelegalandpolicyframeworksthatimpacttheirlivesandempowerthemtomake change.Wewillfocusontheimpactofthedisabilityrightsmovementandhowthis intersectswithourrarediseasecommunity;understandinghowdiverseindividualslivewell andhowtheydoit!
Wewantyoutobeapartofmakingthishappen.Weknowthatyoucareasmuchaswedo aboutimprovingthelivesoftherarecommunityandthisisanopportunitytobepartof somethingnew.
living well symposium: objectives
Attendeeswillunderstandwhatitmeansto“LiveWell”withararedisease.
AttendeesunderstandtheimportanceoftheEqualityAct2010andhowitcanhelp peopleto“LiveWell”withararedisease.
Attendeeswillleavetheeventbelievingthatwiththerightsupportandchoice peoplelivingwithararediseasecan“livewelltoday”.
Time Session Speakers
9:30 ArrivalsandCoffee
10:00 WelcometoLivingWellinStoke-on-Trent
10:10
KeynoteSpeech: TheHistoryandImportanceofDisabilityRights
10.30 TheLivingWellMovement:howwegothere
11:00
11.15
12:20pm
TrueFacesofRare:areportintotherare communiy’sopinionofdisease-specificimagery Doesitmatter?
RefreshmentBreak&InteractivePosterSession: talkwithpeoplelivingwithrarediseasessharewhat livingwellmeanstothem
GarethSnell, MPforStoke-on-Trent
KamranMallick,CEO, DisabilityRightsUK
KirstyHoyle,CEOMSUK NicolaMiller,Co-Founder, ActionforXP, MichelleConway, CRDConsulting
DrTomKenny,Patient AdvocacyLead,Cheisi, LauraSmithvanCarroll,Head ofInsight,MSUK CommunityMember(TBC)
MembersoftheRareDisease Community
12:40pm
KeynoteSpeech: ‘Exploitingthegreyarea’:livedexperienceofthe intersectionsofemploymentwithadegenerative raredisease
TheLawandAccesstoTreatmentsintheUK-what isthelandscapefortherarediseasecommunity?
ChrisFry,Solicitor, InspireLegalGroup
JakeLockyer,RareDisease CommunityMember
IndustryRepTBC RosieLindup,SeniorPolicy& PublicAffairsManager, BioindustryAssociation
agenda cont.
SessionTwo:LivingWellandtheUKRareDiseaseFramework
2:15pm
2:30pm
KeynoteSpeech: ‘Lifeislikeaboxofchocolates’:afortyyearjourney oflivingwithandwithouthopeandrepresenting thehopeofothersagainstabackgroundofdeath, sexuality,identity,familyplanning,andcomplex familydynamics
IntroductionofUKRareDiseaseFrameworkand relatedprojects:
WhatistheRareDiseaseFramework?
RareCare:EvaluationofEngland'sRareDiseases ActionPlan:HowcantheysupportLivingWell?
RareDiseaseQualityStatement:Howcanthey supportLivingWell?
TheVoicesof10,000people:presentationofthe 2024EURORDISRareBarometersurveyonsocial participation
3:30pm Pitches&Promises-whatwillwealldonextto enableandpromotelivingwellforourcommunity?
3:45pm CloseandNetworkingDrinks
GlennStafford,RareDisease CommunityMember
NickMeade,DirectorofPolicy, GeneticAlliance
LindsayBirrell,Co-CEO,Realise Advocacy
ZoeMorrison,SWANClinical NurseSpecialist,Children’s HospitalofWales
EURORDIS/GeneticAlliance (TBC)
KirstyHoyle,CEO,Metabolic SupportUK