Orphanet UK and IE contact:
idoia.gomez-paramio@cmft.nhs.uk
EmailMeForm
Become an Orphanet (UK/IE) Post-validator
- Post-validators contribute to review Orphanet's content by checking the activities/services linked to the disease(s)/group(s) of diseases of their field of expertise and report to the UK/Ireland team any missing activity/service or incorrect information (IF ANY)
- UK/Ireland patient organisations and funding bodies registered on Orphanet can now be Orphanet UK/Ireland post-validators of research activities (research projects, patient registries, mutation registries and biobanks)
- Register your interest to become a post-validator for research activities by completing this form
My organisation is
*
is registered on Orphanet*
is active and can be easily contacted
is willing to check (at least annually) the activities linked to the disease(s) in its expert field
is willing to report missing or incorrect information (IF ANY) to the UK and Ireland Orphanet team
*Patient organisations and Funding Bodies can be registered at www.orphanet.org.uk => register online and more. Funding bodies
need to register or have registered an activity funded by them
Organisation details
Name of organisation
*
Name of head of organisation
*
First
Last
Email
*
I understand that
*
this is a voluntary collaboration
my organisation might be contacted in the future by the Orphanet central team when post-validation is necessary
my organisation can opt-out at any time by sending an email to the contact person in the Orphanet UK/Ireland team
my organisation might appear in future post-validators' listings in recognition of its role as a post-validator
Name of contact person
*
First
Last
Email
*
Organisation's address, telephone and url
*
Disease(s)/group(s) of diseases within organisations' field of expertise
*
Please add the Orpha and/or OMIM number
About my organisation (patients = patients and/or their families)
*
Yes
No
My organisation provides support to patients
My organisation funds research activities
My organisation funds patient(s) and any patient with the above disease(s) is eligible to be funded
My organisation funds patient(s) but funding is limited to specific individuals only
PLEASE NOTE: Only an entry per organisation (=IP) is possible.
Contact rachel.scholey@cmft.nhs.uk if you need assistance
I am aware that at www.orphanet.org.uk and www.oprhanet.ie -> patient organisations I can:
*
provide an article about my organisation's activities
provide a suggestion about the Orphanet UK and IE websites
report a national event
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