"*" indicates required fields Registration InformationHow many adults (18 and older) will be attending?*Please Select One12345How many children (birth – 17) will be attending?*Please Select One0123456Total Number of AttendeesPlease indicate your involvement with the NFED.*Check all that apply SAC Member Staff Affected Individual or Family Member Name* First Last Preferred Name (if different than above)Pronouns*Please Select OneHe/Him/HisShe/Her/HersThey/Them/TheirsOther (please specify)Prefer not to answerPreferred pronouns*Self-Identification*Please Select OneAmerican Indian or Alaska NativeAsianBlack or African AmericanHispanic or Latino/aMiddle Eastern or North AfricanNative Hawaiian or Other Pacific IslanderWhiteMultiracial or Two or More RacesPrefer Not to SayOtherPlease specify*Please list how your name, title, and affiliation should be listed in the Family Conference Program*Address* 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 FasoBurundiCabo VerdeCambodiaCameroonCanadaCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos IslandsColombiaComorosCongoCongo, Democratic Republic of theCook IslandsCosta RicaCroatiaCubaCuraçaoCyprusCzechiaCôte d'IvoireDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEswatiniEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and McDonald IslandsHoly SeeHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea, Democratic People's Republic ofKorea, Republic ofKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacaoMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesiaMoldovaMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth MacedoniaNorthern Mariana IslandsNorwayOmanPakistanPalauPalestine, State ofPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalPuerto RicoQatarRomaniaRussian FederationRwandaRéunionSaint BarthélemySaint Helena, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint MartinSaint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwedenSwitzerlandSyria Arab RepublicTaiwanTajikistanTanzania, the United Republic ofThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTurkmenistanTurks and Caicos IslandsTuvaluTürkiyeUS Minor Outlying IslandsUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUzbekistanVanuatuVenezuelaViet NamVirgin Islands, BritishVirgin Islands, U.S.Wallis and FutunaWestern SaharaYemenZambiaZimbabweÃ…land Islands Country Phone Number*Phone Type*Please Select OneMobileHomeBusinessEmail Address* Please indicate the type of ectodermal dysplasias that affects your family.Please Select OneAcro-Dermato-Ungual-Lacrimal-Tooth ADULT SyndromeAnkyloblepharon-ED Clefting AEC Syndrome Hay-WellsBook's SyndromeClouston SyndromeCoffin-Siris's SyndromeCranioectodermal DysplasiaDermatopathia Pigmentosa ReticulosisEctrodactyly-Ectodermal Dysplasia-Clefting EEC SyndromeEllis-van Creveld's SyndromeEpidermal NevusFocal Dermal Hypoplasia Syndrome GoltzFried's Tooth Nail SyndromeGAPOGorlin-Chaudhry-Moss' Syndrome Gorlin's SyndromeHallermann-Streiff's SyndromeHypohidrotic Ectodermal DysplasiaHypohidrotic Ectodermal Dysplasia ADHypohidrotic Ectodermal Dysplasia ARHypohidrotic Ectodermal Dysplasia IDHypohidrotic Ectodermal Dysplasia XLRIncontinentia PigmentiIsolated HypodontiaJohanson-Blizzard's SyndromeJorgenson's SyndromeKeratitis-Ichthyosis-Deafness KID SyndromeLacrimo-Auriculo-Dento-Digital LADD SyndromeMarshall's Syndrome IOculodentodigital ODD SyndromeOdontoonychodermal Dysplasia SyndromePachyonychia CongenitaRapp-Hodgkin's Syndrome RHSSchopf-Schulz-Passarge's SyndromeSetleis SyndromeSuspected Ankyloblepharon-ED-Clefting AEC SyndromeSuspected Clouston'sSuspected Ectrodactyly-Ectodermal Dysplasia-CleftiSuspected Fried's Tooth Nail SyndromeSuspected Hypohidrotic Ectodermal DysplasiaSuspected Hypohidrotic Ectodermal Dysplasia ADSuspected Hypohidrotic Ectodermal Dysplasia ARSuspected Hypohidrotic Ectodermal Dysplasia XLRSuspected Rapp-Hodgkin's Syndrome RHSSuspected Witkop's Tooth Nail SyndromeTooth and NailTricho-dento-osseous TDO SyndromeTrichodental DysplasiaTrichoodontoonychial DysplasiaTrichorhinophalangael TRP Sydrome ITrichorhinophalangael TRP Sydrome I II Langer-GiediUnknownWitkop's Tooth Nail SyndromeWNT10AOtherPlease specify type of ectodermal dysplasia*T-Shirt Size*Please Select OneYouth X-Small (2-4)Youth Small (6-8)Youth Medium (10-12)Youth Large (14-16)Youth X-LargeAdult X-SmallAdult SmallAdult MediumAdult LargeAdult X-LargeAdult XX-LargeAdult XXX-LargeAdult XXXX-LargeDietary Restrictions*We do our best to accommodate all food allergies, however, there may be instances where it’s not possible to guarantee complete allergen-free preparation due to the nature of the kitchen environment. There will always be some options available to meet requests. All meals are served buffet style. None Dairy Allergy Gluten Free Sugar Free Kosher (no pork/beer) Kosher (meals from a Kosher Kitchen will have a surcharge) Nut Allergy Vegetarian Soft Foods Only Soy Allergy Poultry Allergy Vegan Seafood Allergy Other Please specify allergy*Additional AttendeesName First Last Preferred Name (if different than above)PronounsPlease Select OneHe/Him/HisShe/Her/HersThey/Them/TheirsOther (please specify)Prefer not to answerPreferred pronounsSelf-IdentificationPlease Select OneAmerican Indian or Alaska NativeAsianBlack or African AmericanHispanic or Latino/aMiddle Eastern or North AfricanNative Hawaiian or Other Pacific IslanderWhiteMultiracial or Two or More RacesPrefer Not to SayOtherPlease specifyDate of Birth Month Day Year This field is hidden when viewing the formAgeEmail Address AI Affected by Ectodermal Dysplasias T-Shirt SizePlease Select OneYouth X-Small (2-4)Youth Small (6-8)Youth Medium (10-12)Youth Large (14-16)Youth X-LargeAdult X-SmallAdult SmallAdult MediumAdult LargeAdult X-LargeAdult XX-LargeAdult XXX-LargeAdult XXXX-LargeWill be attending Kays' Kids Camp or Teens Program (determined by age)* Yes No If applicable, grade level for the 2025-26 school year?Needs dental evaluation* Yes No Dietary RestrictionsWe do our best to accommodate all food allergies, however, there may be instances where it’s not possible to guarantee complete allergen-free preparation due to the nature of the kitchen environment. There will always be some options available to meet requests. All meals are served buffet style. None Dairy Allergy Gluten Free Sugar Free Kosher (no pork/beer) Kosher (meals from a Kosher Kitchen will have a surcharge) Nut Allergy Vegetarian Soft Foods Only Soy Allergy Poultry Allergy Vegan Seafood Allergy Other Please specify allergyDo you have any accessibility requirements or need any special accommodations for sessions or events? Yes (please list below) No Please list the requirements or accommodations neededI would be interested in… Volunteering at the event Being a speaker or panelist Select AllName First Last Preferred Name (if different than above)PronounsPlease Select OneHe/Him/HisShe/Her/HersThey/Them/TheirsOther (please specify)Prefer not to answerPreferred pronounsSelf-IdentificationPlease Select OneAmerican Indian or Alaska NativeAsianBlack or African AmericanHispanic or Latino/aMiddle Eastern or North AfricanNative Hawaiian or Other Pacific IslanderWhiteMultiracial or Two or More RacesPrefer Not to SayOtherPlease specifyDate of Birth Month Day Year This field is hidden when viewing the formAgeEmail Address AI Affected by Ectodermal Dysplasias T-Shirt SizePlease Select OneYouth X-Small (2-4)Youth Small (6-8)Youth Medium (10-12)Youth Large (14-16)Youth X-LargeAdult X-SmallAdult SmallAdult MediumAdult LargeAdult X-LargeAdult XX-LargeAdult XXX-LargeAdult XXXX-LargeWill be attending Kays' Kids Camp or Teens Program (determined by age) Yes No If applicable, grade level for the 2025-26 school year?Needs dental evaluation Yes No Dietary RestrictionsWe do our best to accommodate all food allergies, however, there may be instances where it’s not possible to guarantee complete allergen-free preparation due to the nature of the kitchen environment. There will always be some options available to meet requests. All meals are served buffet style. None Dairy Allergy Gluten Free Sugar Free Kosher (no pork/beer) Kosher (meals from a Kosher Kitchen will have a surcharge) Nut Allergy Vegetarian Soft Foods Only Soy Allergy Poultry Allergy Vegan Seafood Allergy Other Please specify allergyDo you have any accessibility requirements or need any special accommodations for sessions or events? Yes (please list below) No Please list the requirements or accommodations neededI would be interested in… Volunteering at the event Being a speaker or panelist Select AllName First Last Preferred Name (if different than above)PronounsPlease Select OneHe/Him/HisShe/Her/HersThey/Them/TheirsOther (please specify)Prefer not to answerPreferred pronounsSelf-IdentificationPlease Select OneAmerican Indian or Alaska NativeAsianBlack or African AmericanHispanic or Latino/aMiddle Eastern or North AfricanNative Hawaiian or Other Pacific IslanderWhiteMultiracial or Two or More RacesPrefer Not to SayOtherPlease specifyDate of Birth Month Day Year This field is hidden when viewing the formAgeEmail Address AI Affected by Ectodermal Dysplasias T-Shirt Size*Please Select OneYouth X-Small (2-4)Youth Small (6-8)Youth Medium (10-12)Youth Large (14-16)Youth X-LargeAdult X-SmallAdult SmallAdult MediumAdult LargeAdult X-LargeAdult XX-LargeAdult XXX-LargeAdult XXXX-LargeWill be attending Kays' Kids Camp or Teens Program (determined by age) Yes No If applicable, grade level for the 2025-26 school year?Needs dental evaluation Yes No Dietary RestrictionsWe do our best to accommodate all food allergies, however, there may be instances where it’s not possible to guarantee complete allergen-free preparation due to the nature of the kitchen environment. There will always be some options available to meet requests. All meals are served buffet style. None Dairy Allergy Gluten Free Sugar Free Kosher (no pork/beer) Kosher (meals from a Kosher Kitchen will have a surcharge) Nut Allergy Vegetarian Soft Foods Only Soy Allergy Poultry Allergy Vegan Seafood Allergy Other Please specify allergyDo you have any accessibility requirements or need any special accommodations for sessions or events?* Yes (please list below) No Please list the requirements or accommodations neededI would be interested in… Volunteering at the event Being a speaker or panelist Select AllName First Last Preferred Name (if different than above)PronounsPlease Select OneHe/Him/HisShe/Her/HersThey/Them/TheirsOther (please specify)Prefer not to answerPreferred pronounsSelf-IdentificationPlease Select OneAmerican Indian or Alaska NativeAsianBlack or African AmericanHispanic or Latino/aMiddle Eastern or North AfricanNative Hawaiian or Other Pacific IslanderWhiteMultiracial or Two or More RacesPrefer Not to SayOtherPlease specifyDate of Birth Month Day Year This field is hidden when viewing the formAgeEmail Address AI Affected by Ectodermal Dysplasias T-Shirt SizePlease Select OneYouth X-Small (2-4)Youth Small (6-8)Youth Medium (10-12)Youth Large (14-16)Youth X-LargeAdult X-SmallAdult SmallAdult MediumAdult LargeAdult X-LargeAdult XX-LargeAdult XXX-LargeAdult XXXX-LargeWill be attending Kays' Kids Camp or Teens Program (determined by age) Yes No If applicable, grade level for the 2025-26 school year?Needs dental evaluation Yes No Dietary RestrictionsWe do our best to accommodate all food allergies, however, there may be instances where it’s not possible to guarantee complete allergen-free preparation due to the nature of the kitchen environment. There will always be some options available to meet requests. All meals are served buffet style. None Dairy Allergy Gluten Free Sugar Free Kosher (no pork/beer) Kosher (meals from a Kosher Kitchen will have a surcharge) Nut Allergy Vegetarian Soft Foods Only Soy Allergy Poultry Allergy Vegan Seafood Allergy Other Please specify allergyDo you have any accessibility requirements or need any special accommodations for sessions or events? Yes (please list below) No Please list the requirements or accommodations neededI would be interested in… Volunteering at the event Being a speaker or panelist Select AllReleasesI give permission to the NFED to distribute the names of my family members attending, city, state, and syndrome to the other conference attendees.* Yes No I consent to the National Foundation for Ectodermal Dysplasias (the NFED) using photographs and video recordings of me and/or my family and hereby irrevocably grant the NFED the perpetual right to use my name and likeness as incorporated in any such photographs or video recordings. I agree that the NFED shall own all rights, title and interest to such photographs and video recordings, and that the NFED may edit, modify, and distribute such photographs without limitation, and without compensation, further permission or notification from me. I hereby waive any inspection or approval of use. I also waive and release the NFED from any claims based upon invasion of privacy or right of publicity.* Yes No In consideration of the acceptance of this registration entry, I/we the undersigned, assume full responsibility for any injury or accident which may occur while I/we am/are attending this conference. I/we hereby release and hold harmless the sponsors, promoters and all other persons and entities associated with this event from any and all personal injury or damage, whether it is caused by negligence of the sponsors, promoters or other persons or entity. Applications for minors will be accepted only if signed by a parent or guardian.* I agree Signature*Date* MM slash DD slash YYYY NameThis field is for validation purposes and should be left unchanged. Δ