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We thrilled to announce first ever UK BPAN Family Day is open for registration! We invite you to join us in London for a dedicated in-person event bringing families and researchers together to exchange knowledge, build connections, and help shape the future of BPAN research. Organised in partnership with Great Ormond Street Hospital, the NIHR Biomedical Research Centre (BRC), and UCL. This day is about listening to families, strengthening understanding, and ensuring patient voices help inform the direction of research now and in the future! See full details & itinerary for the day here: https://www.gosh.nhs.uk/.../support.../brc-events/bpan-day/ We’re incredibly proud to bring this long overdue day to you alongside the World-class and super committed clinical & research teams Please DM or Email us if you have any questions engage@actionforbpan.co.uk

Today, 28th January 2026 we were invited the BRC/NIHR GOSH Gene Therapy in Paediatrics event to represent our small but determined community. The day focused on bringing together GPs, paediatricians, clinicians and patient advocacy groups to provide an understanding of gene therapy technologies, long term effects, latest advancements & the future of gene therapy.  For us, the most impactful part of the day was hearing from the patients and their families who’ve received gene therapy and the incredible benefits that have been truly life-changing 🩷💙 We’re grateful to be part of these conversations and to ensure BPAN families are seen, heard and represented. We even bumped into one of our own BPAN Gene Therapy Professors Simon Waddington!

Join us at the Brands Hatch inflatable 5K or find one of the 26 locations near you !

Fundraise with Action for BPAN and make a difference! Explore various fundraising options, from community events to sponsored challenges, Get involved to help fund vital research and support families affected by BPAN. Fundraising We’re excited that you’re interested in supporting Action for BPAN! Every effort from our supporters is invaluable, and by joining us, you become a vital part of our mission to fund a cure or treatment. There are countless ways to get involved, so let’s work together to make a difference and spread positivity. If you’re fundraising for Action for BPAN, we’d love to hear from you! Contact us for tools, tips, and resources. Fundraising should be an enjoyable and rewarding experience, not a source of stress so we’re here to share our knowledge and ideas to help you maximize donations while keeping the process fun and meaningful! You can also view and download helpful fundraising materials by clicking the button below. Ways To Pay In Your Fundraising Fundraising Materials If you decide to fundraise for Action for BPAN, please read our fundraising guidance and disclaimer by clicking below. Fundraising Disclaimer Sponsored Challenge Use your hobby or challenge yourself to try something new! Read More Fundraise at School Get your school involved with some amazing, creative fundraising ideas! Read More Fundraise in Your Community Bring your local community closer together for some fun fundraising ideas with the neighbours! Read More Fundraise at Work Have some fun at work while fundraising! Wear your company logo with pride! Read More Skills or Services Perhaps you have a skill or service you would like to offer us to help us with our fundraising mission! Read More Your Business Find out how we can partner with you and get your business involved! Read More Make a Donation In Memory Leave an everlasting memory by donating on behalf of your loved one. Read More Leave a Gift in Your Will Find out how you can leave a gift in your will. Read More Don't forget to take lots of photos so we can share and celebrate your efforts! When you have completed a fundraiser and would like to submit your donations, please let us know so we can send you conformation once we have received it. Engage@actionforbpan.co.uk

Review Action for BPAN's privacy policy to understand how we protect your personal information and privacy while supporting our mission. Privacy Policy Privacy Policy Last Updated: 31/12/2024 Action for BPAN ("we", "our", "us") is committed to protecting and respecting your privacy. This Privacy Policy explains how we collect, use, store, and protect your personal data when you visit our website www.actionforbpan.org.uk ("our site"), donate to us, sign up for communications, or engage with us in any other way. By using our site and engaging with our services, you agree to the collection and use of information in accordance with this Privacy Policy. 1. Who We Are Action for BPAN is a registered charity in the UK (Charity Number: 1210529). We are dedicated to providing support and information about BPAN to those who need it, raising awareness and supporting research into BPAN (Beta-propeller protein-associated neurodegeneration). 2. Information We Collect We collect several types of personal data to provide and improve our services: Personal Identification Information: Name, email address, postal address, phone number, and payment details when you make a donation or register for an event. Payment Information: Credit/debit card details and other payment information for processing donations (please note that payment data is processed by third-party payment processors such as PayPal or JustGiving). Donation Data: Details of donations you make, including the amount, method, and frequency of your donations. Communication Data: Information you provide when signing up for newsletters, events, volunteer opportunities, or responding to surveys. Technical Data: Information about how you use our website, such as IP address, browser type, operating system, and page interactions, collected via cookies. 3. How We Use Your Data We use your data for the following purposes: To process donations: To process your donations, provide receipts, and claim Gift Aid (if applicable). To send communications: To keep you informed about campaigns, research, events, fundraising opportunities, and other initiatives related to our charity. For legal and compliance purposes: To comply with legal obligations, including reporting for Gift Aid claims and other regulatory requirements. To improve our website and services: To analyze website usage, improve user experience, and respond to your inquiries or feedback. For administrative purposes: To manage your records, such as keeping track of donations or event registrations. 4. Legal Basis for Processing Your Data We process your personal data under the following legal bases: Consent: When you opt-in to receive communications (e.g., newsletters, event updates), participate in campaigns, or provide donations. Contractual necessity: To process donations, fulfill event registrations, and other services you request. Legal obligations: To comply with applicable laws, such as reporting Gift Aid and tax compliance. Legitimate interests: To manage the relationship between us, including contacting you regarding fundraising activities, events, and services that may be of interest to you. 5. How We Share Your Data We will never sell or rent your personal data to third parties. However, we may share your data in the following circumstances: With service providers: To process payments, provide communications, or manage website functionality. These service providers will only use your data as necessary to perform their functions and are obligated to keep your information secure. For Gift Aid claims: We may share your details with HMRC to claim Gift Aid on eligible donations. For legal reasons: We may share your data if required to do so by law or in response to legal requests by public authorities, including law enforcement agencies. 6. How We Protect Your Data We take your privacy seriously and implement appropriate technical and organizational measures to protect your personal data. These measures include: Secure servers for storing personal data. Encryption of sensitive data, such as payment details, during transmission. Regular security assessments and audits of our systems. While we take reasonable steps to protect your personal data, please note that no method of transmission over the Internet is 100% secure. We cannot guarantee the security of data transmitted to our site, and you do so at your own risk. 7. Your Rights Regarding Your Data You have several rights regarding the personal data we hold about you: Right of access: You have the right to request a copy of the personal data we hold about you. Right to rectification: You have the right to correct any inaccurate or incomplete information we hold about you. Right to erasure: You can request that we delete your personal data, subject to certain exceptions (e.g., if we need to retain it for legal reasons). Right to restriction of processing: You can request that we limit how we process your data in certain circumstances. Right to data portability: You can request that we transfer your personal data to another organization in a structured, commonly used, and machine-readable format. Right to object: You can object to our processing of your personal data in certain situations. Right to withdraw consent: If we are processing your data based on your consent, you can withdraw that consent at any time. If you wish to exercise any of these rights, please contact us at actionforbpan@gmail.com . 8. Cookies Our website uses cookies to enhance your browsing experience. Cookies are small files placed on your device that help us improve site functionality, remember preferences, and analyze site traffic. You can control the use of cookies by adjusting your browser settings. However, blocking certain cookies may affect the functionality of the website. For more detailed information on how we use cookies, please see our Cookie Policy. 9. Third-Party Websites Our website may contain links to third-party websites. These links are provided for your convenience, but we are not responsible for the content, privacy policies, or practices of these third-party sites. We encourage you to review their privacy policies before sharing your personal data with them. 10. Changes to This Privacy Policy We may update this Privacy Policy from time to time. Any changes will be posted on this page, and we will update the "Last Updated" date at the top of the policy. We encourage you to review this policy periodically to stay informed about how we are protecting your data. 11. Contact Us If you have any questions or concerns about this Privacy Policy, or if you wish to exercise any of your rights under data protection law, please contact us: Action for BPAN Westfield Lodge, Old Mill Lane, Bray, Maidenhead, SL6 2BG actionforbpan@gmail.com Registered charity number: 1210529

Thank you for considering a donation to Action for BPAN. Whether you donate one-off or monthly, your support will help us fund the vital research into BPAN and helps provide hope to families affected by the condition. Every contribution brings us closer to a brighter future. DONATE We would be honoured if you could join us in our mission to raise money for a cure or treatment for BPAN. Every contribution, no matter how big or small, when combined will make a significant difference to research progress. We are grateful for your support and appreciate your willingness to help us make a positive impact for everyone living with BPAN. If you would like to support Action for BPAN by making a monthly or one off donation please use the purple JustGiving in button below. Action for BPAN uses JustGiving as they are a trusted provider with the lowest fees that enables us to maximise your donation. Other ways you can donate: There are a few ways in which we can receive your donation, all of which helps us enormously in our goal to fund research and treatment for BPAN. If you have raised money through your incredible fundraising efforts please let us know when you are paying you're fundraising in so we can send you confirmation. Engage@actionforbpan.co.uk One-off Payment Use the button above to make a one-off payment in support of BPAN. You can choose a preselected amount or enter your own amount to donate. Please leave a personalised message too! Monthly Direct Debit Select the 'Monthly' option in the button above to set up a recurring monthly payment. You can choose the amount and opt in or out with JustGiving whenever you want. Bank Transfer You can use the following details to pay your donation directly to us: Name: Action for BPAN Account Number: 67384552 Sort Code: 08-92-99 IBAN: GB11CPBK08929967384552 BIC: CPBKGB22 Pay by Cheque If you would like to send a donation via post please send it to us at: Action for BPAN Westfield Lodge Old Mill Lane Bray, Maidenhead SL6 2BG United Kingdom Leave a Gift in your Will Leave a legacy of hope by including Action for BPAN in your will. Please follow this link to find out how you can do this.