The Patient and Family Voice September 20, 2020 Admin Living with Lymphangiomatosis & Gorham's, Rare As One Amplifying the voices of people with complex lymphatic anomalies (CLA) and their families is critical to advancing research and developing treatments. Please use this form to share your challenges, worries, and what matters most to you. We encourage the patient and both parents, as well as grandparents and siblings to complete their own form. Your responses will be used to raise awareness and to help guide decisions about the direction of our efforts in research.Who is completing this survey?I am the patientParent/legal guardian of the patientWhat is the patient's age?Under 1 year1 to 5 years6 to 10 years11 to 15 years16 to 18 years19 to 25 years26 to 30 years31 to 40 years41 to 50 years51 to 60 years61 or AboveThe patient is no longer livingWhere does the patient live?United StatesCanadaUnited KingdomAfghanistanAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCambodiaCameroonCape 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 EmiratesUruguayUzbekistanVanuatuVenezuelaVietnamVirgin Islands, BritishVirgin Islands, U.S.Wallis and FutunaWestern SaharaYemenZambiaZimbabweÅland IslandsWhat is the patient's diagnosis?Generalized lymphatic anomaly (GLA) / lymphangiomatosis (with or without bone involvement)Gorham-Stout disease (GSD)Kaposiform lymphangiomatosis (KLA)Central conducting lymphatic anomaly (CCLA)The most challenging aspect of living with a GLA/GSD/KLA/CCLA is ____________.I want researchers and doctors to know _____________________.If treatment could help ____________________ that would make a meaningful difference in our daily lives.What matters most to me is _______________________.If you would like the LGDA to contact you with information about future opportunities to share your experiences with medical care and opinions about research, provide your contact information below. (This is optional and will be separated from the other answers you provide on this form.) Name First Last Email