You may complete this form as a patient yourself, or as the patient's representative e.g. parent/carer. You must ensure that you have the patient's permission to submit the information on this form to Ring20 Research and Support UK CIO, if the patient is over 13 years of age.
Ring20 Research and Support UK CIO will use the information provided to populate our r(20) map(s) and for its own statistical data gathering purposes on number of known cases of r(20) worldwide. Where opportunities for appropriate research arise, we will use this information to contact you to signpost you to provide you with the opportunity to participate.
All known cases are included on the r(20) PUBLIC map as an anonymous marker in their region, to indicate prevalence of r(20) cases through our network of members across the world. The PUBLIC map may be shared in our literature and at conferences/events.
Additionally you may indicate that you would like to be included on the r(20) PRIVATE map. In doing so, we will include the patient's/patient representative's contact details to be made available only to other r(20) patients/families who have indicated the same, in order that r(20) patients/families may easily connect with each other through this network. To access the PRIVATE map you will need to supply an @gmail address. You may also chose to send us a recent photo of the patient for inclusion on the PRIVATE map; if so please send to: ring20@ring20researchsupport.co.uk
You may update your preferences as to which map(s) to be included at any time.
As per our Privacy Policy, details provided herein will not be shared with any other parties outside of Ring20 Research and Support UK CIO without your prior consent.
You may unsubscribe from this list at any time.
NOTE: The first 2 fields below are applicable for healthcare professionals and company representatives only. Family representatives do not need to provide a Company name or job title.
Ring20 Research and Support UK CIO will use the information provided to populate our r(20) map(s) and for its own statistical data gathering purposes on number of known cases of r(20) worldwide. Where opportunities for appropriate research arise, we will use this information to contact you to signpost you to provide you with the opportunity to participate.
All known cases are included on the r(20) PUBLIC map as an anonymous marker in their region, to indicate prevalence of r(20) cases through our network of members across the world. The PUBLIC map may be shared in our literature and at conferences/events.
Additionally you may indicate that you would like to be included on the r(20) PRIVATE map. In doing so, we will include the patient's/patient representative's contact details to be made available only to other r(20) patients/families who have indicated the same, in order that r(20) patients/families may easily connect with each other through this network. To access the PRIVATE map you will need to supply an @gmail address. You may also chose to send us a recent photo of the patient for inclusion on the PRIVATE map; if so please send to: ring20@ring20researchsupport.co.uk
You may update your preferences as to which map(s) to be included at any time.
As per our Privacy Policy, details provided herein will not be shared with any other parties outside of Ring20 Research and Support UK CIO without your prior consent.
You may unsubscribe from this list at any time.
NOTE: The first 2 fields below are applicable for healthcare professionals and company representatives only. Family representatives do not need to provide a Company name or job title.
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