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Thread: WARNING, RCH4 Charity Web sites

  1. #11
    Forum Member Ellie's Avatar
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    Oct 2012
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    Marlon,

    The RCH4 website gave out personal data pertaining to my usage of their website to another Forum member, allegedly taking RCH4, including dates and durations of when I accessed the website, in clear violation of Data Privacy Regulation legislation.

    The member then proceeded to publish this personal data on this public Forum, in clear violation of Data Privacy Regulation legislation.

    Quote Originally Posted by mndmarlon View Post
    Let me know and I'll take it up with them.
    No need to, the relevant Authority has been notified.

    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #12
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    Ellie, first time hearing this. First I find it odd that moderators here do not find this topic unjust according to their recent blockage of all new comments or topics regarding RCH4.

    Second, most virus software nowadays contain BPN and VPN features that will block others from seeing your IP address. It works for me. Also, there is no law against obtaining an IP address or reporting to random persons time that IP address has spent on a website or what section of the website was visited.

  3. #13
    Forum Member Ellie's Avatar
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    I replied to Marlon’s query simply to clarify the subject of this thread, so there would be no ambiguity whatsoever as to its subject matter.

    THIS TOPIC IS NOT OPEN FOR FURTHER DEBATE.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #14
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    ALSFRS-R.png

    It has now been over 2 years mum commenced treatment with RCH4. She has great success in that she remains stable with very little worsening of her symptoms and no side effects. Much gratitude and thanks to the Charity that provides ongoing support and advice all free of charge.

  5. #15
    Forum Administrator Admin_MND's Avatar
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    We provide the forum to encourage supportive, informative and useful conversations for people living with and affected by MND. Occasionally subjects may lead to robust debate and opposing opinions. Our view is that this thread has become so polarised that it is no longer serving anyone’s interest and is only causing increased distress and anxiety amongst all contributors. As such, we will be closing this thread to any further entries as we feel this is the best way to try and break the current deadlock. The thread content will remain available to view.

    We would discourage any new threads being started in its place as it is likely that this would end in the same position. We will review any threads that focus on the same subject and may close them down to avoid the current issues being repeated.

    If you have any comments or questions please contact forum@mndassociation.org.

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