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Community Group Privacy




The intention of the group is to enable easy communication within the community.

These Rules are not intended to stifle free speech and expression but rather to streamline

and define the purpose of the group.

The WhatsApp group is a voluntary association, and membership is regarded as a

commitment hereto.

This document is subject to change when the need arises to do so.



Purpose of the groups

The purpose of the Whatsapp / Community Hub and closed facebook groups are to provide a connect point for patients and members to interact with others, share information and ask questions. market research, To assist with business development, To conduct market or customer satisfaction research or for statistical analysis, Evaluate the use of the site, products and services, To contact you regarding products and services which may be of interest to you, provided you have given us consent to do so or you have previously requested a product or service from us and the communication is relevant or related to that prior request and made within any timeframes established by applicable laws, Suggest products or services (including those of relevant third parties) which we think may be of interest to you, Offer you the opportunity to take part in competitions or promotions and to respond to your queries or comments


Sharing of Content/Information

The dissemination of content is encouraged under the following conditions:


Do's - Practices which are appreciated

  • Relevant Posts Only: Everyone must write posts only those are relevant to the group subject.

  • English Please: Please post messages in English only so that every member can understand.

  • Respect to peers. experts and admins: Everyone must talk respectfully to other members, experts and administrators.

  • Value for Time: Please also understand and value each other’s time. If anyone feels this group is not suitable for them, they are free to leave the group. Helps admins accommodate better focused people.


Don'ts - Practices which are banned by Admins:

  • Irrelevant Content: Do not post anything outside the topic. Do not spam or post any irrelevant messages in the group.

  • No Arguing: Please do not argue with group members or with the admins.

  • No stalking of any member: Members are requested to refrain from bothering group members personally. Further, when communicating in the group, they are expected to talk and behave in a polite manner. Any Complaint by any member (about stalking of him/her by some other member of the group) shall be taken very seriously.

  • Do not Change Group Name 8- Icon: Members are prohibited from changing group name and group icon. Only admins will do it as and when necessary.

  • No group invite links: Members are prohibited from sharing external group invite links in the group. Only admins will do it as and when necessary.

  • Pornographic material.

  • Fake news.

  • Bigotry and discrimination: There will be a zero-tolerance approach to infractions of bigotry and discrimination. We will not tolerate –

    • Sexism

    • Racism

    • Homophobia

    • Religious and cultural intolerance


Personal Opinions: The posts in the group by any member or expert shall be their personal views. We shall not be liable for any such information provided.

Agreement to terms. rules 8- guidelines: Your continued presence in the group will mean you agree and abide to the terms of the group.

Removal from the Group: Any deviation from the group guidelines will be taken seriously and offenders will be removed from the group if necessary. Admins reserve the right to remove the offenders from all the associated groups of RSDA.

Note: Members who are removed from the group will not necessarily be added back to the group. So please be careful about what you are sharing with the group. This is done to protect the interest and privacy of group members.


Conversation and Participation

As an active network we encourage conversation and debate, within the above framework, and strongly encourage participation in matters that require individual input.



As per law, Administrators are responsible for the content of groups.

Overall they are responsible for maintaining order though the application of these Rules.

Administrators are allowed to activate the ‘Admin Only’ function under the following circumstances –

  • To draw attention to a single matter, or

  • Restore order and articulate action that will be taken in the case of a violation of the Rules.


Note to Remember

Please read the guidelines. Further please note that this is a cooperation-based community; We are not a commercial helpline. We facilitate easy communication channels between patients, and peer groups, and try our best that each query asked in the group is resolved by someone else in the group. No admin is personally liable for un-answered queries. It will be strictly unethical to abuse admins for un-answered queries. They are there to help without any profit. Further, the Admins reserve the right to change the group rules from time to time in the best interest of the group.



The Rare Diseases SA Team


Contact: 072 476 7552

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