Step 1 of 3 33% Stipend ApplicationDeadline extended to Monday, May 20, 2024 for attendees in the states needing more representation: Arizona, Arkansas, Connecticut, Hawaii, Idaho, Indiana, Iowa, Kentucky, Louisiana, Maine, Michigan, Minnesota, Mississippi, Montana, Nebraska, Nevada, New Hampshire, New Mexico, North Dakota, Ohio, Oklahoma, Oregon, Rhode Island, Utah, Vermont, Washington, West Virginia, and Wyoming. The NFED has limited opportunities for attendees to apply for a stipend to be used toward travel and lodging expenses to the 2024 Stand Together Advocacy Conference. Stipends are awarded on a case by case basis with consideration of family size, travel method, and travel distance with a maximum award amount of $750.Are you applying for a stipend to attend the 2024 Stand Together Advocacy Conference?* Yes No HiddenI/We are applying for(Check all that apply.) Waived Registration Fees Travel Stipend Why do you want to attend and how would your family benefit from attending the 2024 Stand Together Advocacy Conference?*Please list any circumstances that would prevent you from attending the 2024 Stand Together Advocacy Conference.*Registration InformationRegistration fees per household: 1 person $75 2-5 people $150 6 + people $200 Registration includes: Sunday hors-d’oeuvres and activity; Monday breakfast, lunch and dinner; Tuesday breakfast and dinner; advocacy training, and Kays’ Kids Camp and Teens Program activities on Monday. Each paid registration will receive a Stand Together Advocacy Conference T-shirt, leave-behind materials and tote bag (1 per family). Legislative meeting scheduling and transportation to and from Capitol Hill on Tuesday. *Legislative meetings are schedule based on the address provided below. If an attendee has a different address, please submit a separate registration so the proper legislative meetings can be requested.How many adults (18 and older) will be attending?*Please Select One12345How many children (birth-17) will be attending?*Please Select One01234567Total Number of AttendeesAddress* Street Address Address Line 2 City AlabamaAlaskaAmerican SamoaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaGuamHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaNorthern Mariana IslandsOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahU.S. Virgin IslandsVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces Pacific State ZIP Code Phone Number*Phone Type*Please Select OneMobileHomeBusinessEmail Address* Social Media HandlesFor example: Facebook- National Foundation for Ectodermal Dysplasias; Instagram- NFED_ORG With which organization are you advocating for ELSA?* * If consent is given attendee information may be shared with your selected organization. National Foundation for Ectodermal Dysplasias (NFED) SmileTrain myFace Operation Smile American Cleft Palate Craniofacial Association (ACPA) Medical or Dental Organization/Association Other Please indicate the type of ectodermal dysplasia that affects you or members of your family.*Please Select OneAcro-Dermato-Ungual-Lacrimal-Tooth ADULT SyndromeAnkyloblepharon-ED Clefting AEC Syndrome Hay-WellsClouston SyndromeEctrodactyly-Ectodermal Dysplasia-Clefting EEC SyndromeFocal Dermal Hypoplasia Syndrome GoltzFried's Tooth Nail SyndromeHypohidrotic Ectodermal DysplasiaHypohidrotic Ectodermal Dysplasia ADHypohidrotic Ectodermal Dysplasia ARHypohidrotic Ectodermal Dysplasia IDHypohidrotic Ectodermal Dysplasia XLRIncontinentia PigmentiKeratitis-Ichthyosis-Deafness KID SyndromeOculodentodigital ODD SyndromeOdontoonychodermal Dysplasia SyndromeTricho-dento-osseous TDO SyndromeTrichodental DysplasiaTrichorhinophalangael TRP Sydrome ITrichorhinophalangael TRP Sydrome I II Langer-GiediUnknownWitkop's Tooth Nail SyndromeWNT10AOtherPlease specify the type of ectodermal dysplasia.* Please specify organization/association.* Which congenital community do you serve?* Eye Ear Dental/Oral Craniofacial Other Please specify congenital community.* Please specify the type of congenital anomaly that affects you or members of your family.* Total number of attendees needing bus transportation to Capitol Hill?* Total number of attendees needing bus transportation back to the hotel?* Have you participated in a previous NFED-led advocacy day event?* Yes, in-person Yes, virtually Yes, in-person and virtually No Would you be willing to be assigned as a legislative meeting lead for one or more meetings?* Yes Only if needed No Would you be willing to attend extra meetings with legislative offices of which you may not be a constituent?* Yes Only if needed No Attendee InformationPrimary Registrant Name* First Last Suffix Age* Adult (18 and older) AI? Affected Individual 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* 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.* Attendee Name* First Last Suffix Age* Adult (18 and older) Child (birth – 17) Email Address*Each registered adult will need a unique email address for the online meeting portal and to access legislative schedules. Date of Birth* Month Day Year Will be attending Kays' Kids Camp or Teens Program (determined by age)?* Yes No Grade level for the 2024-2025 school year?* AI? Affected Individual 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* 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.* Attendee Name* First Last Suffix Age* Adult (18 and older) Child (birth – 17) Email Address*Each registered adult will need a unique email address for the online meeting portal and to access legislative schedules. Date of Birth* Month Day Year Will be attending Kays' Kids Camp or Teens Program (determined by age)?* Yes No Grade level for the 2024-2025 school year?* AI? Affected Individual 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* 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.* Attendee Name* First Last Suffix Age* Adult (18 and older) Child (birth – 17) Email Address*Each registered adult will need a unique email address for the online meeting portal and to access legislative schedules. Date of Birth* Month Day Year Will be attending Kays' Kids Camp or Teens Program (determined by age)?* Yes No Grade level for the 2024-2025 school year?* AI? Affected Individual 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* 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.* Attendee Name* First Last Suffix Age* Adult (18 and older) Child (birth – 17) Email Address*Each registered adult will need a unique email address for the online meeting portal and to access legislative schedules. Date of Birth* Month Day Year Will be attending Kays' Kids Camp or Teens Program (determined by age)?* Yes No Grade level for the 2024-2025 school year?* AI? Affected Individual 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* 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.* Attendee Name* First Last Suffix Age?* Adult (18 and older) Child (birth – 17) Email Address*Each registered adult will need a unique email address for the online meeting portal and to access legislative schedules. Date of Birth* Month Day Year Will be attending Kays' Kids Camp or Teens Program (determined by age)?* Yes No Grade level for the 2024-2025 school year?* AI? Affected Individual 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* 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.* Attendee Name* First Last Suffix Age?* Adult (18 and older) Child (birth – 17) Email Address*Each registered adult will need a unique email address for the online meeting portal and to access legislative schedules. Date of Birth* Month Day Year Will be attending Kays' Kids Camp or Teens Program (determined by age)?* Yes No Grade level for the 2024-2025 school year?* AI? Affected Individual 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* 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.* Attendee Name* First Last Suffix Age* Adult (18 and older) Child (birth – 17) Email Address*Each registered adult will need a unique email address for the online meeting portal and to access legislative schedules. Date of Birth* Month Day Year Will be attending Kays' Kids Camp or Teens Program (determined by age)?* Yes No Grade level for the 2024-2025 school year?* AI?* Affected Individual 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* 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.* Attendee Name* First Last Suffix Age* Adult (18 and older) Child (birth – 17) Email Address*Each registered adult will need a unique email address for the online meeting portal and to access legislative schedules. Date of Birth* Month Day Year Will be attending Kays' Kids Camp or Teen Program (determined by age)?* Yes No Grade level for the 2024-2025 school year?* AI? Affected Individual 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* 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.* Attendee Name* First Last Suffix Age* Adult (18 and older) Child (birth – 17) Email Address*Each registered adult will need a unique email address for the online meeting portal and to access legislative schedules. Date of Birth* Month Day Year Will be attending Kays' Kids Camp or Teens Program (determined by age)?* Yes No Grade level for the 2024-2025 school year?* AI? Affected Individual 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* 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.* Attendee Name* First Last Suffix Age* Adult (18 and older) Child (birth – 17) Email Address*Each registered adult will need a unique email address for the online meeting portal and to access legislative schedules. Date of Birth* Month Day Year Will be attending Kays' Kids Camp or Teens Program (determined by age)?* Yes No Grade level for the 2024-2025 school year?* AI? Affected Individual 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* 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.* Attendee Name* First Last Suffix Age* Adult (18 and older) Child (birth – 17) Email Address*Each registered adult will need a unique email address for the online meeting portal and to access legislative schedules. Date of Birth* Month Day Year Will be attending Kays' Kids Camp or Teens Program (determined by age)?* Yes No Grade level for the 2024-2025 school year?* AI? Affected Individual 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* 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.* ReleasesI give permission to the National Foundation for Ectodermal Dysplasias (NFED) to distribute the names of my family members attending, state, and syndrome to the Advocacy Affiliate Organization I'm advocating with.* Yes No I consent to the National Foundation for Ectodermal Dysplasias (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 I consent to the National Foundation for Ectodermal Dysplasias (NFED) distributing the names of my family members attending, address, and syndrome to Soapbox Consulting in order to schedule legislative meetings.* Yes Legislative meetings will be scheduled upon receipt of your registration. Should you need to cancel your registration, registration fees are non-refundable.* I understand that my registration fee will not be refunded upon cancelation. Signature* Date* MM slash DD slash YYYY 2024 Stand Together Advocacy Conference and Advocacy Day on Capitol Hill Sponsorship Organizing and promoting an event like this takes tremendous resources, and we can’t do it without you. You can help by becoming a 2024 Stand Together Advocacy Conference and Advocacy Day on Capitol Hill Sponsor! Complete our sponsorship form here.1 Person* Price: 2-5 People* Price: 6+ People* Price: Registration Subtotal $0.00 Thank you for applying for waived registration fees for the 2024 Stand Together Advocacy Conference. We do not need any billing information at this time. After submitting the request, we will notify you on Friday, April 19 via email about whether or not your request was approved. Billing InformationBilling Address* Same as previous Street Address Address Line 2 City AlabamaAlaskaAmerican SamoaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaGuamHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaNorthern Mariana IslandsOhioOklahomaOregonPennsylvaniaPuerto RicoRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahU.S. Virgin IslandsVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces Pacific State ZIP Code Credit Card* American ExpressDiscoverMasterCardVisaSupported Credit Cards: American Express, Discover, MasterCard, Visa Card Number Month010203040506070809101112 Year20242025202620272028202920302031203220332034203520362037203820392040204120422043 Expiration Date Security Code Cardholder Name CC Fees I’d like to help by covering the 3% credit card processing fee. Processing Fee Price: $0.00 Registration Total $0.00 CommentsThis field is for validation purposes and should be left unchanged. Δ