Are you a HADDS Family that wants to easily connect with

other families, but you aren't on Facebook?

 

Check out the HADDS Community Directory! The Foundation facilitates a Community Directory for families that share contact information for individuals living with HADDS and their direct caregivers. 

If you are interested in participating in our Community Directory, please email info@hadds.org and we will send you the link to access the Directory survey. Only the people who participate in and populate the survey will gain access to the Directory. Every question is optional, to be populated at each contributor's comfort level. The Directory is a secure google spreadsheet and is view only without the ability to share, print, or download information.

 

Families can edit their information after submission or delete it completely at any time. It is expensive to have a HIPAA compliant directory, so until we grow as a community and have enough funding to support such a database, this is our solution. 

 

This Directory is for direct caregivers/parents and individuals with HADDS access only. No information will be provided for formal research purposes or to anyone outside of the org or family. 

 

Click below to see the video that shares more about the Community Directory (subtitles translated into two languages, French & Italian, by google translate):

https://www.youtube.com/watch?v=Izmsmm7GVfs&fbclid=IwAR3bB2t2jHk0Ao1kDwAK4iNUME9mVqkvD7N2rGk7teJBprmp2-TWgOmN4H4

If you would like to participate, email info@hadds.org and we will give you the link!

The EBF3-HADDS Foundation was created to promote awareness, research, and support for a rare genetic syndrome discovered in 2016.

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