Member Menu RegisterReport a SurgerySubmit a StoryState or Canadian Province ContactsContact Has any of your information changed? Update your SOFT Registration Information Find when you last updated your registration Register or Update Membership Record Registration is Free. SOFT will not share your personal information with outside organizations and will obtain your permission before sharing it with another SOFT family. SOFT will make your registration information available to the State Contact for your State, unless you tell us not to (see below). SOFT's Privacy Policy can be found in the Membership section of the website top-line menu. Please note that the fields will expand as you type into them. Parent, Professional or Supporter Contact InformationSOFT does not share this information with any other organizationParent, Professional or Supporter Name(s)* First Last Email* Phone xxx-xxx-xxxx for North American format*USA/Canada: Please include Area CodeAddress Street Address Address Line 2 City State / Province / Region ZIP / Postal Code AfghanistanAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCambodiaCameroonCanadaCape VerdeCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos IslandsColombiaComorosCongo, Democratic Republic of theCongo, Republic of theCook IslandsCosta RicaCroatiaCubaCuraçaoCyprusCzech RepublicCôte d'IvoireDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEswatini (Swaziland)EthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard and McDonald IslandsHoly SeeHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacauMacedoniaMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesiaMoldovaMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth KoreaNorthern Mariana IslandsNorwayOmanPakistanPalauPalestine, State ofPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalPuerto RicoQatarRomaniaRussiaRwandaRéunionSaint BarthélemySaint HelenaSaint Kitts and NevisSaint LuciaSaint MartinSaint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth GeorgiaSouth KoreaSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan Mayen IslandsSwedenSwitzerlandSyriaTaiwanTajikistanTanzaniaThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTurkeyTurkmenistanTurks and Caicos IslandsTuvaluUS Minor Outlying IslandsUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUzbekistanVanuatuVenezuelaVietnamVirgin Islands, BritishVirgin Islands, U.S.Wallis and FutunaWestern SaharaYemenZambiaZimbabweÅland Islands Country I am a...*Parent / GuardianParent & Medical ProfessionalMedical ProfessionalSupporter (Extended Family / Friend)Name of ChildInput the name of the child or family of which you are a 'Supporter'Medical SpecialtyMedical InstitutionMedical Credentials(e.g., MD, MPH, RN, LPN, LCSW, etc)Language(s) other than EnglishIf you speak any languages other than English, input them below. Click + to add more Permissions: SOFT will not share your information with any outside organization but would like your permission to share it with your State or Country Contact and within SOFT management. SOFT's Privacy Policy can be found in the Membership selection of the website top-line menu.*Yes, I give permission to share my information with my State's Chapter Chair person and SOFT management.No, SOFT may not share my information with my State's Chapter Chair or SOFT managementMay SOFT send an occasional email to you? If no, uncheck the box. Be assured, SOFT will never share your email address with others. SOFT's Privacy Policy can be found in the Membership selection of the website top-line menu. Yes, SOFT may send an occasional email to me. Add Social MediaWould you like to display your social media accounts in our member directory so other members can find you? Yes, allow SOFT members to find my profiles Facebook Instagram Twitter YouTube Child's InformationExpectant Parent I am an expectant parent Expected Date of Birth YYYY-MM-DD* Date Format: YYYY dash MM dash DD Reason for Joining SOFTI am looking for hope and supportI need more information about my childI want to connect with other trisomy familiesAll of the aboveChild's Name* First Last Gender*MaleFemaleChild's Diagnosis*Full Trisomy 13Full Trisomy 18Mosaic Trisomy 13Mosaic Trisomy 18OtherDescribe the "Other" Affected Chromosome or Diagnosis:*Date of Birth YYYY-MM-DD* Date Format: YYYY dash MM dash DD Is Your Child Living?*YesNoDate of Death YYYY-MM-DD* Date Format: YYYY dash MM dash DD Cause of DeathYour Child's Weight and Length.Please use pounds/ounces and inches.Birth Weight (in lb/oz)Birth Length (inches)Current Weight (lb/oz)Current Length (inches) Date of Current Weight and Length YYYY-MM-DD Date Format: YYYY dash MM dash DD Need help converting weight and length? Convert kg to lbs Convert cm to in Vaccination and Surgery ReportingProviding vaccination and surgery information is optional but helps SOFT's data collection effort. Please note that certain questions apply only to cardiac surgeries.My Child Is/Was Up-to-Date with State Vaccine RecommendationsYesNoMy Child Received Annual Flu VaccineYesNoMy Child Received the Synagis Series for RSV PreventionYesNoDid Your Child React to Any Vaccine?If your child had a vaccine reaction, please say which vaccine caused it, if you can identify which it was, and describe the reaction.SOFT receives frequent inquiries about surgeries/procedures. Providing this information is optional but very helpful to families overall. Enter a FIRST surgery/procedure hereClick the little "+" sign to open a new row for listing an additional surgery (up to 10). Note: If you need to report more than 4 surgeries, please use the "Report Unreported Surgeries" form for the additional ones. The fields will expand as you type into themDate of Surgery/Procedure (MM/DD/YY)Name of Surgery/ProcedureName, City & State of HospitalName of Physician(s)Was it Successful (Yes, No, Partially)? If you reported a CARDIAC surgery on this form, please complete the following: Cardiac SurgeriesWas it difficult to find a willing cardiac surgeon (YES/NO)?Number of days in PICU after Cardiac Surgery:Was your child discharged to home (YES/NO)?If NOT still living, child's survival time after surgery: NameThis field is for validation purposes and should be left unchanged.
