Online spaces community guidelines
WhatsApp BPTF Family Forum
A community space for families impacted by BPTF. We value and affirm the lived experience of individuals and families who generously share here.
PURPOSE: A place to connect, share experiences, ask questions, and stay informed about BPTF-related updates and community news.
GUIDELINES:
• Be respectful and considerate of different cultures, capacities, communication styles, and language backgrounds.
• We welcome members who use translation tools or write in a second language – best-effort communication is appreciated.
• Keep posts relevant to BPTF and family life.
• Share thoughtfully; avoid identifying others without consent.
• Affirm lived experience and the perspectives shared.
• No medical advice – share experience, not instructions or recommendations.
• Keep discussions general; do not name or criticise specific medical professionals, schools, services, or providers.
• No promotions or fundraising unless approved.
• Protect privacy – do not share images, messages, or screenshots outside this group, avoid last names, suburbs, school names or logos, or any other identifying details, and choose images carefully (if you choose to share), ensuring individuals are fully clothed.
MODERATION & RESPONSIBILITIES:
Participation is voluntary. Posts appear in real time and are not pre-screened, filtered, or triaged. Admins moderate as volunteers on a best-effort basis.
Members are responsible for what they share. BPTF Families does not collect or use information from this group as data. If data is ever needed for any purpose, a clear consent process will always be used. By participating, members acknowledge and accept these guidelines. If you have a question or any message concerns you, please directly message an admin. You can find a list of admins in the ‘Group Members’ section. Please refrain from directly messaging other group members, without their consent. Admins may remove messages or photos that breach these guidelines or compromise member safety.
Legacy Facebook Group -People with BPTF gene variants chromosome 17q24.2
The Facebook group “People with BPTF gene variants chromosome 17q24.2” was first created by the wonderful original community members in 2019 and has become a long‑standing space where families have found and connected with each other.
It isn’t owned by, affiliated with, or moderated by BPTF Families (the organisation).
Most of the day‑to‑day conversation happens in the BPTF WhatsApp groups. There is a general Family Forum and a separate Parents/Carers Forum. Many families find those spaces a bit more active and easier to keep up with.
The Facebook group remains a community‑run space, and we’re glad it continues to be a place where people can share.
BPTF Families Limited, the organisation, does not own or operate online community spaces and is not responsible for content shared therein – but offers guardrails that help these groups to continue to be affirming and inclusive spaces, and a valuable source of information and support, as membership grows over time.
WhatsApp Parents/carers BPTF Forum
A space for parents and carers supporting a child or adult impacted by BPTF. We value and affirm the lived experience of those who generously share their insights.
PURPOSE: A practical peer-support space for discussing day-to-day experiences, care needs, behavioural challenges, schooling experiences, and learning from each other as we navigate life with BPTF in the family. Respect lived experience and diverse communication styles, cultures, and capacities.
GUIDELINES
• We welcome members who use translation tools or write in a second language – best-effort communication is appreciated.
• Affirm the perspectives shared by parents and carers.
• Share information and experiences, not directive instructions or judgement about behaviour challenges, schooling, therapies, interventions, or medical decisions.
• Keep discussions general; do not name or criticise specific medical professionals, schools, services, or providers.
• Be mindful of distressing detail or speaking with judgement.
• Protect privacy – do not share images, messages, or screenshots outside this group, avoid last names, suburbs, school names or logos, or any other identifying details, and choose images carefully (if you choose to share), ensuring individuals are fully clothed.
MODERATION & RESPONSIBILITIES
Participation is voluntary. Posts appear in real time and are not pre-screened, filtered, or triaged. Admins moderate as volunteers on a best-effort basis. Admins may remove messages.
Members are responsible for what they share. BPTF Families does not collect or use information from this group as data. If data is needed for any purpose, a clear consent process will always be used. By participating, members acknowledge and accept these guidelines. If you have a question or any message concerns you, please directly message an admin. You can find a list of admins in the ‘Group Members’ section. Please refrain from directly messaging other group members, without their consent.
Related Policies
While BPTF Families Limited does not hold responsibility for any online community spaces, it has a suite of Board‑endorsed policies directly related to how information is used and shared, centred on keeping everyone safe and comfortable:
Communications Protocols
Privacy and Data Handling Statement
Safeguarding and Supports Policy