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Accelerating Research on Your Condition

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For help in accelerating research on your condition/disease:

  1. Read any sections in which you are interested in a compensium of advice on starting and sustaining an advocacy organization.
  2. Consider the resources mapped in Advocacy Atlas, designed to help individuals and communities navigate a diagnosis and associated issues.
  3. Once you have read extensively, take a look at the Navigating the Ecosystem of Translational Science web pages and see where you might want to begin – check out the various linked resources.
  4. Consider Genetic Alliance’s registry and its associated technical assistance: Program for Engaging Everyone Responsibly (PEER), since it is one of the basic tools you will want to create to accelerate research on your condition.
  5. Consider biobanking.
  6. Take a look at Disease InfoSearch to see what other support groups are doing.
  7. Consider joining Genetic Alliance Community Forum where you can ask other leaders questions. Simply ask to join and we will add you.
  8. For more information see attachments bellow.

We introduce you to our registry system - Genetic Alliance’s Platform for Engaging Everyone Responsibly (PEER) - one of the basic tools you will want to create. Read this terrific paper on our new system. 

Best way to see it is to create an account and go into a demo. Access demo portal here

I have attached two documents that describe PEER – an infographic and a fact sheet.

Roles and responsibilities for portal sponsors (disease advocacy organizations, professional societies, communities) is attached – a great place to start.

The two attached papers and screenshots describe some aspects of PEER.

And finally – if you want to explore our biobank – the attached biobank document is useful.

Pdf documents: 
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