CRB1 Network – Open to new members!

CRB1 Network

If you are affected with CRB1 inherited retinal disease (also known as LCA8 or RP12), are related or close to someone who is affected or have professional associations with CRB1, please join the “CRB1 Network” Facebook group.  Here is the link to join:

https://www.facebook.com/groups/3920756591309215

 

The purposes of CRB1 Network are twofold:

                                i.            To bring together as many CRB1 affected individuals as possible to demonstrate to gene therapists, other scientific researchers and pharmaceutical companies that there is a sizeable demand for CRB1 tailored cures and treatments.

                              ii.            To provide reference guides on:

(a) how to obtain a complete CRB1 diagnosis in different countries worldwide.  Whilst most people in CRB1 Network will already have some form of CRB1 diagnosis, this guide will help those who have not yet managed to obtain a complete diagnosis with both CRB1 mutations identified;

(b) the mutations associated with CRB1 inherited retinal disease;

(c) how to record a CRB1 diagnosis on the relevant global and national patient registries. 

 

In respect of these reference guides, we will be posting further details and welcome information from any members who would like to share their own experiences in order to help others.  Together, we can develop and expand these  guides so that they become indispensable tools.

 

There will be times when we will announce CRB1-specific events and updates and members are welcome to do the same. However, this is not the main purpose of CRB1 Network, since often members will have already heard about such events and updates through other sources.

 

It is estimated that over 100,000 patients have CRB1 related disease worldwide. This number includes my daughter.  Over the last 8 years, I have worked with charities, doctors and research scientists around the world in the shared mission to understand, diagnose and treat CRB1 disease.

 

Through CRB1 affected individuals coming together, obtaining a complete CRB1 diagnosis and recording that diagnosis on the relevant patient registries, we can demonstrate to gene therapists, other scientific researchers and pharmaceutical companies that not only is there a sizeable demand for CRB1 tailored cures and treatments but that we are organised and ready to work with them.  This is essential in order to drive forward with CRB1 tailored cures and treatments worldwide.

 

These are exciting times. There is a growing momentum in this area of science and we are on the cusp of a breakthrough but we need to come together to push it over the finishing line.

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