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NNPDF e-Mail Listservs, Facebook and Social Media Communication Guidelines

NNPDF e-Mail Listservs, Facebook and
Social Media Communication Guidelines


The NNPDF e-mail listservs, FaceBook and Social Media Communication Guidelines is our resource for all Niemann-Pick families and for those who have an interest in Niemann-Pick. Members of the listservs, Facebook and social medias have included parents, siblings, extended family, friends, researchers, doctors and nurses, students, and others.

The guidelines about participation in the listservs, Facebook and social media are meant to ensure that everyone who needs to use the social medias can. A wide degree of discussion is allowed. These are general guidelines.

The social media Moderator has the final say about violations and enforcement, including temporary or permanent termination of service. If you need to send messages that fall outside of these guidelines, other methods are available. These include direct email to individuals, use of other listserv/Facebook groups, phone calls, and postal mail.

1. Be respectful of others. There is a difference between discussing and arguing.

2. Be reasonably “on topic”. There is a difference between “Let me brighten your day” and “Here are the 400 jokes I received today.”

3. Do not monopolize the list. Your issue is important but it isn’t the only issue that is important. There is a difference between “I could use some help” and “Let’s only talk about me and my problem.”

4. Issues that create debate without resolution are only allowed for a limited time. There is a difference between “Let’s agree to disagree” and “Let’s argue forever.”

5. Illegal or potentially illegal activities are not allowed. There is a difference between venting and slander.

6. Messages should not be harmful, threatening, abusive, harassing, obscene, misleading, slanderous, or otherwise objectionable.

7. Commercial activities are not allowed. There is a difference between “This worked for me” and “Buy this.”

8. MEDICAL ADVICE SHOULD NOT BE INFERRED FROM THE CONTENT OF ANY MESSAGE ON THE SOCIAL MEDIAS. No one on the listservs, Facebook and social medias is qualified to give medical advice via the same (including doctors, nurses, and other medical professionals). All communications or suggestions that relate to care or treatment should be approved by your personal physician. If an individual writes “Use this” or “That is good for you” or “This is the dosage” – that is NOT medical advice – it is the personal opinion of an individual. Niemann-Pick is a widely variable disease. People with similar symptoms will react very differently to the same therapies.

CONSULT YOUR PHYSICIAN FIRST BEFORE USING ANY SUPPLEMENT, TREATMENT, THERAPY, MEDICATION, ETC.

9. All members are also subject to the Yahoo! Groups and Facebook Terms of Service.

Send questions or comments to the NNPDF Central Offices at nnpdf@nnpdf.org.