First Name/ Nome *
Last Name/ Cognome *
Email *
Country/ Paese * United States Canada Afghanistan Albania Algeria American Samoa Andorra Angola Anguilla Antarctica Antigua and Barbuda Argentina Armenia Aruba Australia Austria Azerbaijan Bahamas Bahrain Bangladesh Barbados Belarus Belgium Belize Benin Bermuda Bhutan Bolivia Bosnia and Herzegovina Botswana Brazil British Indian Ocean Territory British Virgin Islands Brunei Bulgaria Burkina Faso Burundi Cambodia Cameroon Cape Verde Cayman Islands Central African Republic Chad Chile China Christmas Island Cocos (Keeling) Islands Colombia Comoros Congo Cook Islands Costa Rica Croatia Cuba Curaçao Cyprus Czech Republic Côte d’Ivoire Democratic Republic of the Congo Denmark Djibouti Dominica Dominican Republic Ecuador Egypt El Salvador Equatorial Guinea Eritrea Estonia Ethiopia Falkland Islands Faroe Islands Fiji Finland France French Guiana French Polynesia French Southern Territories Gabon Gambia Georgia Germany Ghana Gibraltar Greece Greenland Grenada Guadeloupe Guam Guatemala Guernsey Guinea Guinea-Bissau Guyana Haiti Honduras Hong Kong S.A.R., China Hungary Iceland India Indonesia Iran Iraq Ireland Isle of Man Israel Italy Jamaica Japan Jersey Jordan Kazakhstan Kenya Kiribati Kuwait Kyrgyzstan Laos Latvia Lebanon Lesotho Liberia Libya Liechtenstein Lithuania Luxembourg Macao S.A.R., China Macedonia Madagascar Malawi Malaysia Maldives Mali Malta Marshall Islands Martinique Mauritania Mauritius Mayotte Mexico Micronesia Moldova Monaco Mongolia Montenegro Montserrat Morocco Mozambique Myanmar Namibia Nauru Nepal Netherlands New Caledonia New Zealand Nicaragua Niger Nigeria Niue Norfolk Island North Korea Northern Mariana Islands Norway Oman Pakistan Palau Palestinian Territory Panama Papua New Guinea Paraguay Peru Philippines Pitcairn Poland Portugal Puerto Rico Qatar Romania Russia Rwanda Réunion Saint Barthélemy Saint Helena Saint Kitts and Nevis Saint Lucia Saint Pierre and Miquelon Saint Vincent and the Grenadines Samoa San Marino Sao Tome and Principe Saudi Arabia Senegal Serbia Seychelles Sierra Leone Singapore Slovakia Slovenia Solomon Islands Somalia South Africa South Korea South Sudan Spain Sri Lanka Sudan Suriname Svalbard and Jan Mayen Swaziland Sweden Switzerland Syria Taiwan Tajikistan Tanzania Thailand Timor-Leste Togo Tokelau Tonga Trinidad and Tobago Tunisia Turkey Turkmenistan Turks and Caicos Islands Tuvalu U.S. Virgin Islands Uganda Ukraine United Arab Emirates United Kingdom United States Minor Outlying Islands Uruguay Uzbekistan Vanuatu Vatican Venezuela Viet Nam Wallis and Futuna Western Sahara Yemen Zambia Zimbabwe
City
Phone/ Telefono
Are you a patient with FSHD?/ Sei un/una paziente con FSHD? * Yes/ Sì No
Date of Birth/ Data di nascita *
Your age at onset of symptoms/ A che età c’è stato l’esordio dei sintomi? *
Your age at diagnosis?/ A che età hai ricevuto la diagnosi? *
Have you had genetic testing? What were the results? Hai fatto un test genetico? Quali sono stati i tuoi risultati? * I have not had a genetic test/ Non ho fatto il test genetico FSHD Type 1/ FSHD Tipo 1 FSHD Type 2/ FSHD Tipo 2 FSHD Type 1 and FSHD Type 2/ FSHD Tipo 1 e Tipo 2 FSHD - unsure of type/ FSDH – tipo non definito I'm not sure/ Non sono sicuro/a
Do you have genetically related parents, siblings or children with FSHD?/Hai genitori, fratelli o figli consanguinei con FSHD? * I have at least one parent, sibling, or child with FSHD/ Ho almeno un genitore, fratello o figlio con FSHD I do not know of any parent, sibling, or child with FSHD/ Non ho genitori, fratelli o figli con FSHD
Do you have other genetic relatives - NOT parents, siblings, or children -- with FSHD?/ Hai altri familiari consanguinei – NON genitori, fratelli o figli – con FSHD? * I have at least one genetic relative (apart from my parents, siblings, or children) with FSHD/ Ho almeno un familiare consanguineo (non genitori, fratelli o figli) con FSHD I do not know of other genetic relatives with FSHD/ Non ho nessun familiare consanguineo con FSHD
I am a ... (check all that apply)/ Sono un … (segna tutte le risposte pertinenti) Relative of a Patient/ Parente di un pazienteCaregiverPhysician/ MedicoResearcher/ RicercatorePhysical Therapist/ Fisioterapista Other Clinician/ Altro tipo di clinico
Would you like to join the Early-Onset Chapter?/ Vorreste essere inseriti nella Sessione Esordio Precoce? Yes/ SìNo
I am interested in (check all that apply)/ Sono interessato a (segna tutte le risposte pertinenti) Education/ FormazionePeer Support/ Supporto dei pari (aiuto da parte di altri pazienti) Research/ RicercaClinical Trials/ Trial CliniciFundraising/ Raccolta FondiVolunteering/ Volontariato
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