Where is Rare Disease in New England?
We need to put rare diseases on the map. Welcome to the RNE Data Mapping Project.
Have you ever been asked...
How many people have your disease in this area?
How many people in our district or state have a rare disease?
Why should we spend so much time and money on diseases that we know are rare?
Do you know where I can find someone to talk to who also has my rare disease?
These are simple questions that can be very difficult to answer.
There is very little geographic data on WHERE rare disease patients live. In reality, the data do exist but are so fragmented that they are nearly impossible to pull together without breaking HIPAA protections.
The RNE Data Mapping Project is here to solve this problem.
Take our survey.
Help put Rare Disease on the map. Click the button below:
Purpose of the Data Mapping Project
The purpose of the RNE Data Mapping Project is to begin to generate the geographic data we need to draw the map of rare disease in New England.
Our initial objectives are simple:
Collect location data from as many rare disease patients and families as we can
Map that data by zip code to create a snapshot of where rare disease is in New England
Call for Action
To accomplish this, we only need two pieces of data from each rare patient/family: the diagnosis and/or mutation and the zip code where the patient lives. No name. No Address. No e-mail address.
Prototye: Map of New England with Rare Disease Pins
Your Privacy Matters
This very simple data model protects participants’ privacy. The diagnosis and zip code combination cannot be used to identify an unknown individual. We have developed a survey that collects only those two data points.
Your data will not be used for any other purpose than building the prototype of the map and informing the Rare New England Data Project Team about how the simple survey performs.
After you have completed the survey, you will be redirected to a separate survey that asks if you would be willing to be contacted by Rare New England via e-mail. The databases are separate and will not be used together. There is no obligation to provide your e-mail address.
Our stories are the trees. Data is the forest.
Decision-makers are drawn to our stories but need data to inform their decisions.
Take our survey by clicking the button below:
or scan the QR Code here:
Thank You!
This project was partially supported by a Rare Giving Tools and Resources Grant from Rare Disease Legislative Advocates (RDLA)
If you would like to support this initiative to Put Rare Diseases on the Map, please reach out to info@rarenewengland.org