Enter National Fabry Disease Foundation's Social Networking Site
The
NFDF
is partnering with Inspire to offer the
Fabry
disease community an exciting social networking opportunity.
We learn so much about
Fabry
disease from each other and have so much support and understanding to give to each other, we are eager for your participation.
The
NFDF’s
social networking site is anonymous except for what you share in your profile name, profile, and/or discussions. You may use a nickname as your profile name and limit
your personal information.
We hope this program offers additional support to members of the
Fabry
community as we all deal with the everyday challenges of living with
Fabry
disease.
We are very excited to provide great features such as:
Participate in group discussions
Participate in private discussions
Find other individuals with Fabry disease and family members in your area. You may decide to meet locally.
Write in your personal journal/blog to share your experiences with Fabry disease and to let others know what is going on in your life from time to time.
Receive email notifications of new discussions, replies and journal entries.
Receive email notifications of
Fabry disease
clinical trials, if you elect to receive them.
...
and more
Register with Inspire on the
NFDF
community support page when you wish to participate in discussions or receive email notifications .
We strongly support
Inspire’s
community guidelines.
Some of the important points and excerpts are: (For complete guidelines visit : http://www.inspire.com/about/guidelines/
Do’s:
•
Take your time and be safe – Set your privacy settings so you are sharing only the information you want to be shared.
•
Meet wonderful people and be yourself – Don't hesitate to welcome
others to the site .
•
Be supportive - Support and care for one another.
•
Take a deep breath – On the internet, it's easy to lose context and misunderstand someone. If a member posts something that bothers you, take a deep breath and pause before replying. You're replying to another person with feelings and probably some challenges to deal with..
•
Let the
NFDF
know at info@TheNFDF.org if something is wrong. If we miss a problem, let Inspire know.
Do Not’s:
•
No obscenity, hate speech or otherwise disrespectful posting
•
No marketing or solicitation
•
No site scraping, e-mail harvesting or spam
•
Don't use Inspire to offer or exchange medication
•
Don't use the
NFDF
/Inspire networking site in other ways that are improper or abusive
We look forward to hearing from you soon.
