Parent Support Group

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Malan Syndrome Foundation offers an online WhatsApp group for parents of those affected by Malan syndrome. The purpose of this group is to foster a supportive community where caregivers can connect and share their experiences. As part of the Foundation's commitment to establishing an inclusive and safe environment, we have established community guidelines to ensure productive communication. These guidelines are designed to create a space where everyone feels welcome and that prioritizes the well-being of all caregivers and their families.

 

Please review our Privacy Policy here.

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How to Join

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This support group is intended for parents (or primary caregivers) of individuals with a confirmed diagnosis of Malan syndrome. If you would like to be added to this secure WhatsApp group, please email us at info@malansyndrome.org.

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Guidelines

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*By participating in this online WhatsApp group, all users agree to these guidelines.

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Anti-Intolerance Policy: Malan Syndrome Foundation stands against the unlawful treatment of others, including but not limited to all forms of cyberbullying, cyber-harassment, hate speech, discrimination or threats based on race, ethnicity, national origin, religion, sexual orientation, sex, gender, gender identity, disability, immigration status, or any other status protected by law.

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1. Be Kind. All posts, comments, and replies within the group must be respectful of others. Malan Syndrome Foundation will not tolerate offensive language, personal attacks, or discriminatory remarks.

2. Respect the Privacy of Others. Malan Syndrome Foundation prohibits the sharing of others personal information, including names, medical details, or contact information without the express permission of such individual.

3. Don’t Promote, Solicit, or Spam. Do not use this community space for advertising or promoting personal businesses or unrelated fundraisers, products or services.

4. Keep Discussions Relevant. This is a community about caring for those affected by Malan syndrome and related topics. Please do not discuss topics or issues that have little-to-nothing to do with caring for those with Malan syndrome or our community. We do not want you to feel limited or constrained to any specific topics or ideas, but topics that have no relation to our Foundation’s stated mission or purpose will likely not be relevant.

5. Don’t Share False or Misleading Information. Community members are prohibited from sharing any information that is false or misleading. This includes exaggerations, unverified claims, and misinformation about medical treatments, caregiving techniques, or any other relevant topics. Sharing accurate information is crucial for the well-being of our community. The moderators, at their sole discretion, may remove any post or comment that violates this policy.

6. Be Understanding. Recognize that each caregiver's journey is unique, and respect their perspectives and experiences, even if they differ from your own.

7. Conflict Resolution. If conflicts arise, handle them respectfully and privately, either through direct messaging or by contacting a group moderator for assistance.

8. Report Violations. Report any violations of these guidelines to the group moderators. Moderators will take immediate appropriate action, as needed.  

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Violations

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Malan Syndrome Foundation reserves the right, at our complete discretion, to remove any posts, comments, or statements we feel violate our community guidelines. If a post or comment is removed by a group moderator, the individual whose post or comment was removed will be notified. Any individual who violates the community guidelines may receive one warning before removal from the community group. Allowance to return to the group will be determined at the sole discretion of Malan Syndrome Foundation. Violation of our Anti-Intolerance policy is likely to result in a permanent ban.

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Disclaimer

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Please be aware that the views and opinions expressed within this online support group are those of the individual participants and do not represent the official stance or opinions of Malan Syndrome Foundation.  We strive to provide a safe and supportive platform for caregivers; however, we caution against relying on information provided by other participants in this group. Malan Syndrome Foundation does not offer medical advice and participants should not rely on any medical information shared within this group. We recommend consulting with healthcare professionals for medical advice and guidance. Malan Syndrome Foundation does not endorse or assume any liability for the accuracy or reliability of any information shared in this group.