Registration Form

Clinical Research Network for Undiagnosed & Rare Disorders
Registration Form
Privacy and Confidentiality Policy

This privacy policy sets out how Rare Disease Ghana Initiative uses and protects any information that you provide to the organization. Rare Disease Ghana Initiative is a nonprofit Organization with the mission to improve the wellbeing and quality of life of families affected by rare diseases in Ghana through awareness creation, advocacy, research and patient support. Rare Disease Ghana Initiative is committed to ensuring that your privacy is protected. Should we ask you to provide certain information by which you can be identified; you can be assured that it will only be used in accordance with this privacy and confidentiality agreement.Every information you provide is protected under the Data Protection Act, 2012 of the Republic of Ghana. We will not sell, distribute or lease your personal information to third parties unless we have your permission or are required by law to do so. We may use your personal information to contact you or send you information that we think you may find of interest. Rare Disease Ghana Initiative may change this policy from time to time by updating this privacy policy. Rare Disease Ghana Initiative will contact you regularly to ensure that you are happy with any changes. By filling and sending this form, you consent to be a member of Ghana Reference Network for Undiagnosed, Genetic and Rare Diseases (GRN-UGRD). Your application will be reviewed and you will be contacted as soon as it is approved.
Have you read and accept the privacy terms outlined above? *

Yes No

What best describe you? *
Please indicate if you want your contact details only made available when requested by *

Clinicians Researchers Patients/Families Patient Organisations/Support Groups Industry Government/Policy Makers None

Name and Contact Details
Title *
Name *

First Name Middle Name Last Name
E-mail *
example@example.com
Phone Number: *

Area Code Phone Number
Address: *

Street Address

Street Address Line 2

City Region

Postal / Zip Code
Profession *
Affiliated Academic/ Research/ Medical Institution *
Does this Academic/Medical/Research facility have a multidisciplinary clinic or service for a rare and/or genetic disease? *

Generic and rare diseases areas of special interest
Please specify which population you are interested in. *
Indicate the rare disease or genetic disorder special interest area.
Patient Services offered
Patient Services offered
Patient Services offered
Patient Services offered
Patient Services offered
Patient Services offered
Other details and important note (eg referral required)
Do you provide transitional planning and care for patients from paediatric to adult health care services? *
If yes, please provide details:
Are you prepared to be involved in the development and provision of education in the rare and/or genetic disease area of interest? *
Are you prepared to be contacted by health professionals/researchers with treatment/diagnostic or research queries on the rare and/or genetic disease area of interest? *
Are you available for telehealth consults? *
Other organisations provide details on Health Professionals with a special interest in rare and genetic diseases. Can your details to be provided to such organisations *
If there is any additional information you would like to include that relates to increasing awareness of rare and genetic disease and access to support and treatment.

Once you submit your application, we will contact you shortly to confirm your membership application.

Thank you!
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Clinical Research Network for Undiagnosed & Rare Disorders

Registration Form

Name and Contact Details

Generic and rare diseases areas of special interest