Become a BBS UK Member Application Form to become a BBS UK Member Become a BBS UK Member Step 1 of 6 16% By completing the membership form, you are consenting to your details being added to BBS UK's database. If at anytime you wish to withdraw your membership, or have your personal information removed, please contact [email protected]Membership TypeThere are two types of membership: 1. Full membership Full Membership of Bardet-Biedl Syndrome UK (the CIO) shall be open to: any adult diagnosed with Bardet-Biedl syndrome and his/her family and any family with one or more children diagnosed with Bardet-Biedl syndrome including legal guardians, foster parents, parents by adoption and subject to the agreement of the Charity Trustees, the carers and grandparents. Those applying for membership, shall indicate his or her agreement to become a member and acceptance of the duty of members as set out in the constitution which is: It is the duty of each member of the CIO to exercise his or her powers as a member of the CIO in the way he or she decides in good faith would be most likely to further the purposes of the CIO. 2. Informal membership Informal or Associate (non-voting) membership shall be open to those who are interested in furthering the work of the CIO.Please select the type of membership you would like:(Required) I am eligible and apply for Full Membership of the CIO I am eligible and apply for Informal or Associate (non-voting) Membership of the CIO Your DetailsName(Required) TitleDr.MissMr.Mrs.Ms.Mx.Prof.Rev. Prefix First Last Address(Required) Street Address City ZIP / Postal Code Email(Required) Phone(Required)Organisation name (if applicable) Are you an unpaid carer for a family member?(Required) Yes No Please tell us your connection to Bardet-Biedl syndrome:(Required) Person with BBS Parent/carer of someone with BBS Close family member of someone with BBS Extended family member of someone with BBS Friend of someone with BBS BBS UK staff Volunteer for BBS UK Trustee for BBS UK Interested professional Please indicate below if you have any professional skills or experience that you feel BBS UK could benefit from and would be happy to be contacted about:(Required) Organisational management Finance Volunteering Public Relations Media Information Technology Contract Management Law Education Publishing BBS UK will be developing its volunteering programme. Would you like to be contacted in the future about volunteering opportunities?(Required) Yes No Contact PreferencesData protection legislation requires you to provide your explicit consent in order for BBS UK to contact you in the ways that are important to you. Please use this section to let us know which methods of communication are acceptable to you. Please complete as many options as you are comfortable with to give us every chance to maintain contact with you. My preferred method of contact is:(Required) Paper copy: Standard Print Paper copy: Large Print (20 Arial) Email Telephone SMS (text messaging) Consent Options:(Required)Please tick as many as you feel comfortable with, to give us the best chance of staying in contact. I consent to being contacted by telephone I consent to being contacted by email I consent to being contacted by SMS (text messaging) I consent to being contacted by post (letters) Please unsubscribe me from all communications - I/We do not wish to be contacted by Bardet-Biedl Syndrome UK. Are you registered as severely sight impaired and eligible to receive post via ‘Articles for the Blind’?(Required) Yes No How would you like to receive our newsletter?(Required)Please tick as many as you feel comfortable with, to give us the best chance of staying in contact. Email Standard print Audio file sent by email Audio CD I do not want to receive the newsletter I consent to receiving information about BBS UK services, events, information and updates:(Required) Yes No I consent to receiving information about fundraising events and activities(Required) Yes No I consent to receiving information and updates regarding research, clinical trials, treatment and care options relevant to Bardet-Biedl Syndrome(Required) Yes No Equality and diversity monitoringThe following questions support BBS UK with ensuring its services are inclusive and equitable.Please indicate the ethnic group you identify with:(Required) Asian or Asian British - Indian Asian or Asian British - Pakistani Asian or Asian British - Bangladeshi Asian or Asian British - Chinese Any other Asian or Asian British background Black, Black British, Caribbean or African - Caribbean Black, Black British, Caribbean or African - African Any other Black, Black British, or Caribbean background Mixed or multiple ethnic groups - White and Black Caribbean Mixed or multiple ethnic groups - White and Black African Mixed or multiple ethnic groups - White and Asian Any other Mixed or multiple ethnic background White - English, Welsh, Scottish, Northern Irish or British White - Irish White - Gypsy or Irish Traveller White - Roma Any other White background Other ethnic group - Arab I would prefer not to answer Other Please indicate your religion or belief:(Required) Buddhist Christian Hindu Jewish Muslim Sikh Other religion No religion I would prefer not to answer Please add any further information you would like us to know about your ethnic group, religion or belief: If English is not your first language, please specify your preferred language for spoken and written communication: Partner information (if applicable)This section should only be completed by a partner of applicant 1, living at the same address. All other adults must complete their own form.Does your partner who lives at the same address at your want to be added as a member as well?(Required) Yes No Please indicate the connection to applicant 1 (adult children should submit their own form):(Required) Partner of applicant Husband of applicant Wife of applicant Please select the type of membership you would like:(Required) I am eligible and apply for Full Membership of the CIO I am eligible and apply for Informal or Associate (non-voting) Membership of the CIO Name(Required) TitleDr.MissMr.Mrs.Ms.Mx.Prof.Rev. Prefix First Last Email(Required) Phone(Required)Are you an unpaid carer for a family member?(Required) Yes No Please tell us your connection to Bardet-Biedl syndrome:(Required) Person with BBS Parent/carer of someone with BBS Close family member of someone with BBS Extended family member of someone with BBS Friend of someone with BBS BBS UK staff Volunteer for BBS UK Trustee for BBS UK Interested professional Please indicate below if you have any professional skills or experience that you feel BBS UK could benefit from and would be happy to be contacted about:(Required) Organisational management Finance Volunteering Public Relations Media Information Technology Contract Management Law Education Publishing BBS UK will be developing its volunteering programme. Would you like to be contacted in the future about volunteering opportunities?(Required) Yes No My preferred method of contact is:(Required) Paper copy: Standard Print Paper copy: Large Print (20 Arial) Email Telephone SMS (text messaging) Consent Options:(Required)Please tick as many as you feel comfortable with, to give us the best chance of staying in contact. I consent to being contacted by telephone I consent to being contacted by email I consent to being contacted by SMS (text messaging) I consent to being contacted by post (letters) Please unsubscribe me from all communications - I/We do not wish to be contacted by Bardet-Biedl Syndrome UK. Are you registered as severely sight impaired and eligible to receive post via ‘Articles for the Blind’?(Required) Yes No How would you like to receive our newsletter?(Required)Please tick as many as you feel comfortable with, to give us the best chance of staying in contact. Email Standard print Audio file sent by email Audio CD I do not want to receive the newsletter I consent to receiving information about BBS UK services, events, information and updates:(Required) Yes No I consent to receiving information about fundraising events and activities(Required) Yes No I consent to receiving information and updates regarding research, clinical trials, treatment and care options relevant to Bardet-Biedl Syndrome(Required) Yes No Family informationThis section relates to children aged under 18; over 18s must submit a form of their own. Please select 'No' to the next question to skip to the next section. We use this information to link your details in our database.Do you have a child/children you'd like to submit information about?(Required) Yes No Children InformationAdd as many children as you wish using the 'Add Entry' button: Does your child have BBS? What is the full name of your child? What is the date of birth of your child? What is the sex of your child? Actions Edit Delete There are no Entries. Add Entry Maximum number of entries reached. Regular donations - Become a Friend of BBS UKBBS UK do not charge for membership, but some members choose to become a ‘Friend’ of BBS UK with a monthly donation from as little as £2 which enables us to support more people with BBS, their families, and carers. If you tick ‘yes’ we will send you further information on how to become a ‘Friend’.Would you like to become a Friend of BBS UK and make a regular donation?(Required) Yes, I would like to become a Friend of BBS UK. Please send me more information I am already a Friend of BBS UK No, I do not want to become a Friend of BBS UK How we look after and safeguard information about youBBS UK is a voluntary organisation, primarily supporting those with Bardet-Biedl Syndrome, their families and/or carers. We aim to provide our members with the highest quality support and information and to do this we need to keep records including name, address, contact numbers, email address, date of birth and names of family members where provided. This information will not be shared for any reason, unless: You ask us to do so; We ask and you give us specific permission; We are required by law; We are permitted by law, for example where public interest overrides the need to keep the information confidential. Anyone who receives information from us also has a legal duty to keep this information confidential, subject to recognised exceptions of the types listed above. Your Rights You have the right to confidentiality under the Data Protection Act 2018, UK GDPR, the Human Rights Act 1998 and the common law duty of confidence (the Disability Discrimination and the Race Relations Acts may also apply). All BBS UK staff and volunteer contracts contain a requirement to keep member information confidential. Our guiding principle is that we hold your information in strict confidence. Your right to view your information You have the right to ask for a copy of all information we hold about you. Your request must be made in writing to the BBS UK Information Governance Lead, we are required to respond to your request within 40 days. If you think information we hold about you is inaccurate or incorrect, please let us know. Contact Us: www.bbsuk.org.uk [email protected] BBS UK Information Governance Lead: Tonia Hymers: 07591 206680 [email protected] BBS UK, 43 Balton Way, Dovercourt, Harwich, Essex, CO12 4UPPhoneThis field is for validation purposes and should be left unchanged. Δ
