Consent form: Privacy Notice and Consent Statement for Blog Submissions
MENA Organisation for Rare Diseases is committed to protecting the privacy and personal data of individuals who use this website and submit information through our blog, forms, or online services.
By submitting information through this website, you acknowledge that you have read this Privacy Notice and agree that the Organisation may collect, use, store, and process the information you provide for the purposes described below.
1. Information We May Collect
When you use the blog or submit a form, the Organisation may collect the following information:
- Your name
- Your email address
- Your phone number, if provided
- Your country or location, if provided
- The content of your blog post, comment, story, or message
If you choose to share personal experiences related to rare diseases, health, diagnosis, treatment, or medical history, this may include sensitive personal information. Please only submit information that you are comfortable sharing with the Organisation and the website administrator for review and processing.
2. Purpose of Collecting Information
The Organisation collects and processes personal data for the following purposes:
- To receive, review, and manage blog submissions
- To contact you about your submission or enquiry
- To improve awareness, education, and community support related to rare diseases
- To maintain website security and prevent misuse
- To comply with applicable legal and regulatory requirements
The Organisation will only use your personal data for the purposes explained in this notice, unless it obtains your consent for another purpose or is legally required to process it.
3. Consent
By ticking the consent box and submitting your information, you confirm that:
- You have read and understood this Privacy Notice and the website Terms & Conditions
- You consent to the Organisation and the website administrator collecting, storing, reviewing, and processing the information you submit
- The information you provide is accurate to the best of your knowledge
- You are not submitting another person’s personal or medical information unless you have their permission
- You understand that you may contact the Organisation to request access, correction, withdrawal of consent, or deletion of your personal data, subject to applicable legal requirements
4. Review of Blog Content
Submitting content does not guarantee that it will be published or displayed on the website. The website administrator may review, edit, approve, reject, or remove submitted content to ensure it is appropriate, respectful, accurate, and aligned with the Organisation’s purpose.
The Organisation and website administrator will not intentionally publish your private contact details, such as your email address or phone number, without your permission.
If your submission includes personal health information or identifies another person, the website administrator may request further confirmation before publication or may remove identifying details.
5. Data Sharing
The Organisation will not sell your personal data. Your information may only be accessed by authorised team members, the website administrator, or service providers where necessary to manage the website, review submissions, maintain security, or comply with legal obligations.
If third-party service providers are used, the Organisation will take reasonable steps to ensure that they handle personal data securely and in accordance with applicable data protection requirements.
6. Data Storage and Security
The Organisation will take reasonable technical and organisational measures to protect personal data from unauthorised access, loss, misuse, alteration, or disclosure.
Where possible, personal data should be stored on secure servers located in the UAE or with approved service providers that provide appropriate data protection and security safeguards.
If personal data is transferred or stored outside the UAE, the Organisation will take steps to ensure that such transfer is handled in accordance with applicable UAE data protection requirements.
7. Retention of Data
The Organisation will retain personal data only for as long as necessary for the purposes described in this notice, including managing submissions, maintaining records, resolving disputes, complying with legal requirements, and supporting website security.
When personal data is no longer required, the Organisation will take reasonable steps to delete, anonymise, or securely archive it.
8. Your Rights
Subject to applicable UAE data protection laws, you may have the right to request:
- Access to the personal data the Organisation holds about you
- Correction of inaccurate or incomplete personal data
- Deletion of your personal data
- Withdrawal of consent
- Restriction or stopping of certain processing activities
- Information about how your data is used or shared
To make a request, please contact the Organisation using the contact details provided on the website.
9. Medical Disclaimer
The blog and website content are provided for education, awareness, and community support only. They are not a substitute for professional medical advice, diagnosis, or treatment. Users should always seek advice from a qualified healthcare professional regarding medical conditions or treatment decisions.
10. Contact
If you have questions about this Privacy Notice, your personal data, or your rights, please contact the Organisation through the official contact details listed on the website.
Submission form
I have read and agree to the Privacy Notice and Terms & Conditions. I consent to the Organisation and the website administrator collecting, storing, reviewing, and processing the information I submit through this form for the purposes described. I confirm that I am not submitting another person’s personal or medical information unless I have their permission.