A handful of papers, a Wikipedia page, and a few Dutch-based websites. ... Supporting Research. Research is the future of Twin Anemia Polycythemia Sequence.SkiptocontentStichtingTAPSSupportwascreatedtosupportresearchintoTwinAnemiaPolycythemiaSequence,ararecomplicationofmonochorionictwins.Learnmoreaboutwhywecreatedthisfoundation.TheBeginningsIn2013,StephanieandMariusErnstwereexcitedtodiscoverthattheywereexpectingidenticaltwingirls.At24weeks,theirlocalhospitaldiagnosedthemwithstage1TwintoTwinTransfusionSyndrome(TTTS),andreferredtotheLUMCinLeiden,TheNetherlands.TheTTTSresolved,butoverthefollowingweeks,theirtwinsshowedsignsofTAPSdeveloping.Onthe12thofDecember,2013,itwasdecidedthatthegirlswerebetteroutthanin,andonthatcoldwintermorning,2littlegirlsmadetheirdramaticexitintotheworld.Readmorehere.MathildeandEmilieatbirthWhyAFoundation?IfIhaveathousandideasandonlyoneturnsouttobegood,Iamsatisfied.LordAlfredNobelWhenwewerelookingforinformationaboutTAPS,therewasn’talotofoptions.Ahandfulofpapers,aWikipediapage,andafewDutch-basedwebsites.TherewasalotofinformationonTwintoTwinTransfusionSyndrome,butwhenwereachedoutnoonecouldgiveusgoodinformationorinsomecases,couldevenrelatetoourdiagnosisandthelevelofuncertaintywefaced.Andthenourgirlsweredelivered,andtheysurvivedtheunknown.Overthefollowingyears,Stephaniestartedwritingaboutherexperienceandremainedincontactwiththeresearchteam.Moreandmore,sherealizedthattherewasaneedtobreakdownthebarriersbetweenresearchandthemedicalcommunity,andensurethatpatientsgetaccurateinformation.In2018,shecreatedtheTAPSSupportFacebookgroup,whichhasgrownoverthepastfewyears,andhascreatedacommunitywherepatientscantalkabouttheirconcerns,getthelatestinformationtoadvocate,andtheTAPSSupportwebsitewhereinformationisputintolanguagethatparentscanunderstand.Thiswasn’tenoughthough,andshewantedtoworkoutawaytogivebacktotheteamthatsavedEmilieandMathilde’slives.ThisishowtheideaforStichtingTAPSSupportwasborn.SupportingResearchResearchisthefutureofTwinAnemiaPolycythemiaSequence.Our