If You Want To Go Fast, Go Alone.
If You Want To Go Far, Go Together.
Community
African Proverb
Coming Together Is A Beginning;
Keeping Together Is Progress; Working Together Is Success.
Family
Henry Ford
None Of Us Is As Smart As All Of
Us.
Team
Ken H Blanchard
Male
Female
NoGender
Total population on map
How the registration works ?
How do I put my pin on the world map?Enter your data into the form, this will create a pin in your chosen location which you can later edit.
You may choose the GPS coordinates of your pin. Your local SGN data guardians periodically review the map for accuracy to maintain an accurate family count.
Guardians may add anonymous pins to the map to signify a family is known to SGN in that location.
Anonymous pins will not contain any Personal Identifying Information and will generally be localized to the nearest major city to retain anonymity.
Why a worldmap ?
The map is a simple yet powerful visualisation to show the prevalence of SYNGAP1 worldwide. We follow in the footsteps of other rare genetic disorder foundations such as ADNP, GRIN2B and DYRK1A who also maintain similar maps.
The map tool is intended to enable family connections.
It will allow families to anonymously reach out to each other.
How to update my data?
You will receive a pass key to update your pin. Do not share this key with anyone else.
A link to the modification page will be embedded in the registration confirmation you'll receive.
If you want to remove the pin completely, please contact us to the following email address: registration@syngap1.me
