On May 23, 2013 we launched an important new initiative: a Patient Insights Network for Parry Romberg Syndrome.
We registered our Romberg's Connection with the Invitae Patient Insights Network. We feel good about endorsing this Network. We know how badly we need research on Parry Romberg Syndrome (PRS). Maybe this is the first step to make that happen.
Invitae provides network systems that connect disease communities with scientists studying those conditions. Invitae registries collect data on more than 250 rare diseases and power the NIH's Global Rare Diseases (Patient) Registry and Data Repository (GRDR) and the NIH NICHD Down Syndrome registry. Invitae is a full partner in Europe's RD-Connect platform ensuring global, open access to patient-provided medical histories. For more information, visit Invitae Patient Insights Network.
By joining this Network, it provides a common resource to bring together those living with Parry Romberg Syndrome, their families, health care providers, researchers, all in one place. By sharing a common network system and health surveys, new discoveries can be developed within individual diseases and across multiple diseases.
The goal of this project for us is to gain the attention of researchers who might be interested in Parry Romberg Syndrome. This is a way for those of us with PRS to hopefully get attention from the research community. This Network is open to members in other countries as well as the United States.
Please study the information. If you wish to register, your personal information is not made public. The details of how you are affected with PRS will be made public. You have the option of removing yourself from the Network at any time.
To register please go to Parry Romberg.Connect Patient Registry
Note: The Username and Password will be created during the Registration Process.
There is also a short survey to fill out concerning our disorder.
For our members in other countries, there is a "translate" button at the top of the page to change to your language.