Become a BBS UK Member

Membership is free, so anyone who needs our support can join.

Our members are at the heart of everything we do. By joining, you become part of a growing community helping to shape our work and expand our impact. Active membership strengthens our transparency, credibility, and reach.

As a member, you can:

Help shape the direction of the charity
Vote in trustee elections and stand as a trustee
Access projects such as the IT Equipment Fund and Chris Humphreys Memorial Fund

You can also support us in ways that suit you, including:

Taking part in surveys, focus groups, and consultations
Sharing your experiences
Fundraising

There’s no pressure to get involved, but we’ll support you if you do.

Fill in the form below to get started or contact [email protected] with any questions.

BBS UK Membership Form

Become a BBS UK Member

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This field is for validation purposes and should be left unchanged.

By completing the membership form, you are consenting to your details being added to BBS UK's database.

If you would like to join our mailing list as a non-member, please contact us. If at anytime you wish to withdraw your membership, or have your personal information removed, please contact [email protected]

Membership Type

There 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 Details

Name(Required)

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

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

Contact Preferences

Data 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)

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

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 (PDF, Word and link to audio transcriptions)

Standard print

I do not want to receive the newsletter

I consent to receiving information about BBS UK services, events, information and updates:(Required)

Yes

I consent to receiving information about fundraising events and activities(Required)

Yes

I consent to receiving information and updates regarding research, clinical trials, treatment and care options relevant to Bardet-Biedl Syndrome(Required)

Yes

Equality and diversity monitoring

The 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

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

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)

Prefix First Last

Email(Required)

Phone(Required)

Are you an unpaid carer for a family member?(Required)

Yes

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

My preferred method of contact is:(Required)

Paper copy: Standard Print

Paper copy: Large Print (20 Arial)

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

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.

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

I consent to receiving information about fundraising events and activities(Required)

Yes

I consent to receiving information and updates regarding research, clinical trials, treatment and care options relevant to Bardet-Biedl Syndrome(Required)

Yes

Family information

This 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

Children Information

Add 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

There are no Entries.

Maximum number of entries reached.

Regular donations - Become a Friend of BBS UK

BBS 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

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How we store your data

If you would like more information about how we process your data, please see our privacy notice in the footer of our website.

Become a BBS UK Member

Membership is free, so anyone who needs our support can join.

BBS UK Membership Form

Become a BBS UK Member

By completing the membership form, you are consenting to your details being added to BBS UK's database.

Membership Type

1. Full membership

Full Membership of Bardet-Biedl Syndrome UK (the CIO) shall be open to:

2. Informal membership

Your Details

Contact Preferences

Equality and diversity monitoring

Partner information (if applicable)

Family information

Regular donations - Become a Friend of BBS UK

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Contact the BBS UK office team:

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