At The Muscular Dystrophy Campaign Nigeria (TMDCN), we take your privacy seriously and are committed to protecting your personal information. We believe you should always know what information we collect, why we collect it, how we use it, and the choices you have.

This Privacy Policy explains how we collect, use, store, share and protect your personal information when you use our website, contact us, receive our services, register with our patient registry, make a donation, volunteer, participate in our events, or otherwise interact with us.

This policy has been prepared in accordance with the Nigeria Data Protection Act (NDPA) 2023 and other applicable laws.

Who we are

The Muscular Dystrophy Campaign Nigeria (TMDCN) is a registered non-profit organisation dedicated to improving the lives of people living with muscular dystrophy and other neuromuscular conditions through education and awareness, advocacy, patient and family support, healthcare professional education, research and patient registries, community engagement, and partnerships and collaboration

Where we collect information

We collect information in several ways.

Information you give us directly

You may provide information when you contact us by email, telephone or through our website, complete one of our online forms, register for our patient registry, request support or information, apply for grants or assistance, register for webinars, conferences or events, make a donation, volunteer with us, share your story or lived experience, subscribe to our newsletters or updates, participate in surveys or research

Information we receive from others

With your consent, we may receive information from healthcare professionals, hospitals or clinics, research collaborators, partner organisations, family members or caregivers acting on your behalf, fundraising platforms or payment providers

Information collected automatically

When you visit our website, we may automatically collect limited technical information such as IP address, browser type, device information, pages visited, date and time of access, website usage statistics

We use this information to improve our website, monitor performance and keep our systems secure.

What information we collect

Depending on your relationship with us, we may collect:

Personal information such as name, address, telephone number, email address, date of birth, gender, emergency contact details

Health information – Where necessary, we may collect information relating to muscular dystrophy diagnosis, other neuromuscular conditions, medical history relevant to the support we provide, mobility needs, rehabilitation needs, information needed for research participation, information required for our patient registry.

Health information is treated as sensitive personal data and is processed only where appropriate consent or another lawful basis exists.

Financial information – Where applicable, we may collect donation details, payment information, bank account details for grants or financial support

We do not store complete debit or credit card information on our systems where payments are processed by secure third-party payment providers.

How we use your information

We use your personal information to respond to your enquiries, provide advice, information and support, deliver our services and programmes, register you for events, training and webinars, manage our patient registry, support medical research and improve understanding of muscular dystrophy, process donations, administer grants and assistance programmes, recruit and manage volunteers, improve our services, monitor the impact of our work, meet our legal and regulatory obligations

Where you have given your consent, we may also send you newsletters, awareness campaigns, research updates, event invitations, fundraising appeals, volunteer opportunities

You can withdraw your consent or unsubscribe at any time.

Research and Patient Registry

TMDCN supports ethical research to improve diagnosis, treatment and care for people living with muscular dystrophy and other neuromuscular conditions.

If you join our Patient Registry or participate in research, we will explain what information is being collected, how it will be used, who it may be shared with, your rights, and how you can withdraw your consent where applicable

Research data may be shared with approved researchers or international registry partners only where appropriate approvals and safeguards are in place.

Sharing your information

We never sell your personal information. We may share information where necessary with healthcare professionals involved in your care, research institutions and collaborators, service providers working on our behalf, payment processors, professional advisers, government or regulatory authorities where required by law

All organisations handling information on our behalf are required to keep it secure and confidential.

Photography, videos and personal stories

With your permission, we may use photographs, videos and personal stories to raise awareness, promote our work, support fundraising, publish educational materials, share information on our website and social media

Where required, we will obtain your consent before publishing identifiable images or personal stories.

Parents or legal guardians must provide consent for children under 18 years of age.

Cookies

Our website uses cookies to improve your browsing experience and help us understand how visitors use our website.

You can disable cookies through your browser settings, although some parts of the website may not function correctly.

How we protect your information

We take appropriate technical and organisational measures to protect your personal information from unauthorised access, loss, misuse, alteration, disclosure

Access to personal information is limited to authorised staff, volunteers and contractors who require it to perform their duties.

How long we keep your information

We retain personal information only for as long as necessary to provide our services, meet legal obligations, support research where appropriate, resolve disputes, maintain appropriate organisational records

When information is no longer required, it is securely deleted or anonymised.

Your rights

Subject to applicable law, you have the right to access your personal information, request correction of inaccurate information, request deletion of your information where appropriate, withdraw your consent, object to certain processing activities, request a copy of your personal information, lodge a complaint regarding how your information is handled

We will respond to requests within the time required by applicable law.

Changes to this Privacy Policy

We may update this Privacy Policy from time to time.

Any changes will be published on this page together with the revised effective date.

Contact us

If you have any questions about this Privacy Policy or how we process your personal information, please contact us

By email: info@themusculardystrophy.org or musculardystrophyng@gmail.com

By telephone: +234 8122129998, +234 8114 555504, or +44 7407 115775 (WhatsApp)

Effective Date: 4 August 2026