2025 Conference Satisfaction Survey

Help us make next year even better! Whether you joined us in person or virtually, your feedback is essential. Please take a few moments to complete the ULF Conference Satisfaction Survey—your insights help us improve programming and enhance the experience for everyone, year after year.

About You – Step 1 of 8

Name

First

Last

Email

What is your home country? *United States of AmericaAfghanistanAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBolivia (Plurinational State of)Bonaire, Saint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCabo VerdeCambodiaCameroonCanadaCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos (Keeling) IslandsColombiaComorosCongoCongo (Democratic Republic of the)Cook IslandsCosta RicaCroatiaCubaCuraçaoCyprusCzech RepublicCôte d'IvoireDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEswatini (Kingdom of)EthiopiaFalkland Islands (Malvinas)Faroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and McDonald IslandsHondurasHong KongHungaryIcelandIndiaIndonesiaIran (Islamic Republic of)IraqIreland (Republic of)Isle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea (Democratic People's Republic of)Korea (Republic of)KosovoKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacaoMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesia (Federated States of)Moldova (Republic of)MonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth Macedonia (Republic of)Northern Mariana IslandsNorwayOmanPakistanPalauPalestine (State of)PanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalPuerto RicoQatarRomaniaRussian FederationRwandaRéunionSaint BarthélemySaint Helena, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint Martin (French part)Saint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint Maarten (Dutch part)SlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwedenSwitzerlandSyrian Arab RepublicTaiwan, Republic of ChinaTajikistanTanzania (United Republic of)ThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTurkmenistanTurks and Caicos IslandsTuvaluTürkiyeUgandaUkraineUnited Arab EmiratesUnited Kingdom of Great Britain and Northern IrelandUnited States Minor Outlying IslandsUnited States of AmericaUruguayUzbekistanVanuatuVatican City StateVenezuela (Bolivarian Republic of)VietnamVirgin Islands (British)Virgin Islands (U.S.)Wallis and FutunaWestern SaharaYemenZambiaZimbabweÅland Islands

Tell us about yourself! Are you a…

• Patient, Affected Person
• Parent of an Affected Person
• Spouse of an Affected Person
• Sibling of an Affected Person
• Other Family or Friend of an Affected Person
• Caregiver of an Affected Person
• Medical Professional
• Research Professional
• Pharma Professional
• Student
• Allied Health Professional
• Advocacy Partner
• Other

Check all that apply

Other:

What type of leukodystrophy are you/your family affected by or primarily interested in if you are an advocate/medical professional/researcher? *

What age is the affected individual(s) you are seeking information on?

Have you ever attended a ULF Conference in the past? *

• Yes
• No

How many?

To help us better understand, please explain why:

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What days did you attend? *

• Thursday, June 26th – Scientific Symposium
• Friday, June 27th – Family Conference Day 1
• Saturday, June 28th – Family Conference Day 2

How did you find out about this year's conference? *

• Email from the ULF
• Social Media
• Contacted the ULF directly
• ULF Website
• Internet Search
• Invited By a member of the ULF
• Other

Other: *

How did you attend? *

• In-Person
• Virtually

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Did you use/enable zoom translated captions? *

• Yes
• No

Did you have any difficulties in enabling translated captions? *

• Yes
• No

Did you have any difficulties in connecting virtually? *

• Yes
• No

How did you feel about the streaming experience of the sessions?

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Was it convenient for you to follow the presentations virtually? *

• Yes
• No

Why did you choose to participate virtually instead of in-person? *

Did the zoom translation captions allow you to follow the presentations correctly in your language? *

• Yes
• No

Would you prefer to participate in-person in the future? *

• Yes
• No

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ABOUT THE SCIENTIFIC SYMPOSIUM THURSDAY JUNE 22nd

Overall rating of the Scientific Symposium? (Thursday)

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Scientific Symposium Experience Comments: (Thursday)

Overall rating of the poster presentations?

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Poster Presentation Experience Comments:

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ABOUT THE FAMILY CONFERENCE FRIDAY & SATURDAY JUNE 23rd & 24th

Overall rating of the Family Conference? (Friday & Saturday)

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Family Conference Experience Comments: (Friday & Saturday)

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Did you have any Kids or Teenagers attend the Conference with you?

• Yes
• No

Did you have any children who attended the Kids or Teen Room? *

• Yes, Kids Room
• Yes, Teen Room
• Yes, Both Kids & Teen Room
• Some of my kids did attend, and some did not attend
• They did not attend Kids or Teen Room

Please help us understand why your children did not attend the Kids or Teen Room to help us for future conferences *

What was your reason for your children attending the Kids or Teen Room? (needed entertaining, needed daycare, socializing,etc.) *

How comfortable did you feel having your child(ren) in the Kids or Teen Room?

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Do you have any suggestions or comments that relate to the Kids or Teen Room? If so, please explain

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Registration & Information

Registration Process

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Conference information provide before start of conference

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Onsite experience with Conference check-in and on-site assistance

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Registration & Information Comments:

Sessions

Number of sessions you attended *

• 1-2
• 3-4
• 5-6
• 7+

Quality of information presented

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Choice/Variety of presentation topics

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Session lengths

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

What was the best session you attended and why?

What topic(s) or speaker(s) would you like to see added next year?

Session Comments

Networking, Interactions, & Assistance

Time available to talk with other attendees

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Accessibility of medical professionals and presenters

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Networking, Interaction, & Assistance Comments

Evening Events

Welcome Dinner

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Poster Presentation

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Awards Ceremonies

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Closing Dinner

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Evening Events Comments

Venue

Quality of sleeping rooms

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Quality of audiovisual support (focus, brightness, sound clarity, volume)

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Quality of meals and snack stations

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Responsiveness of hotel staff

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Venue Comments

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Do you plan to attend the ULF Conference annually?

• Yes
• No
• I plan on attending in the future, just not every year.

Why?

Did the event meet your expectations? *

• Yes
• No

What is your favorite part of the ULF Conference? *

What is your least favorite part of the ULF Conference?

What would you like us to add to the ULF Conference?

As a direct result of programs and presentations at the 2024 ULF Family Conference:

0= N/A 1= Strongly Disagree 5= Strongly Agree

I have an increased understanding of my / my family member’s health condition.

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

I feel more empowered with tools for my/our health journey.

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

I have a stronger community of people who understand and who I can lean on.

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

I feel less alone on this health journey.

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

I feel more able to speak with health care providers about my/my family member's health condition.

Selected Value: 0

0= N/A 1= Strongly Disagree 5= Strongly Agree

Thank you for participating in the 2025 ULF Scientific Symposium & Family Conference!

Are there any notes, comments or suggestions that you would like us to know?

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