1. AKU Online Making information, advice and resources available online Jenni Thorburn, Online Communities Officer, AKU Society

2. Introduction to AKU Online Received funding as part of a Reaching Communities Grant Grant was to grow our presence and information online and create a new online patient community Grant also providing funding for Online Communities Officer (me!) Big Lottery Fund Grant

3. Introduction to AKU Online Facebook Twitter AKU Society website PatientsLikeMe Community RareConnect Forum Clinical Trials microsite YouTube Pinterest What’s available online for AKU?

4. Why is it useful? Connect patients Connect carers & families Provide information easily and affordably Give patients & families access to AKU experts and specialists Provide a community Monitor healthIdentify new patients Raise awareness and presence International

5. Facebook Weekly Wednesday blog Photos from events Links to relevant articles Stories from the AKU team, patients, experts, researchers.... News, events, campaigns & fundraising Research updates What is it for? www.facebook.com/AKUSociety

6. Facebook 250+ likes Updated daily Place for advice, questions & suggestions Connect to patients & families from all over the world Keep up to date Post your own news Get involved in campaigns Why use it? www.facebook.com/AKUSociety

7. Twitter 140 character limit Short, succinct updates Updated 5 – 6 times daily Trending topics talked about worldwide by millions of people Mainly news and opinion Hashtags (#) connect you to specific topics and discussions Tweet Tweet... What is Twitter exactly? www.twitter.com/findAKUre

8. More than just celebrities Huge patient movement online Rare disease community Big community of advocates, campaigners, scientists, doctors Companies and organisations Regular Joe! Who uses it? Twitter Tweet Tweet... www.twitter.com/findAKUre

9. Twitter Get your voice heard Get involved in topics you’re interested in Keep up to date with news Use it to find a job Influence news Network & interact all over the world Fundraise Connect with like-minded people Why use it? Tweet Tweet... www.twitter.com/findAKUre

10. AKU Society Website Recently added BrowseAloud to improve accessibility Our online communities Google Translate Clinical Trials Website Latest events Twitter feed AKU Blog Our banner slider

11. AKU Society Website How do you use it? What’s good about it? What could be improved?

12. AKU Society Website Menu and pages created for National AKU Centre Weekly blog post Menu and pages created for online communities Fundraising tips Improved ‘What is AKU pages’ New branding and colours BrowseAloud added Contact an Expert page added Changes to website in last year:

13. AKU Society Website Improve information about ‘Living with AKU’, specifically financial and social information Add patient stories & videos to ‘National AKU Centre’ menu Add a section for carers or families Two new Patient Information Documents to be available online for newly diagnosed patients – one for adults diagnosed and one for children (and their parents/guardians) Page for AKU Society resources, including leaflets, presentations and the Patient Information Document Plan for the next year: What else would you like to see on our website?

14. PatientsLikeMe Get to know others affected by AKU via their profiles or on the AKU forum Monitor your AKU and your general health using PatientsLikeMe’s tools and surveys Create and browse AKU symptom and treatment reports Create a Doctor Visit Sheet from PatientsLikeMe to share with your GP or consultant Upload photos, share things about yourself and include general updates about AKU and your life Interact with the AKU Society team

15. PatientsLikeMe What do patients think? “PatientsLikeMe seems amazing. It is really strange seeing so many people with AKU signed up to it. It’s really easy to use and makes contacting others with AKU so fast! Thank you for setting this up.” - Rosie Garbutt When I came across AKU and PatientsLikeMe, I found it a humbling experience. It was fantastic to be able tell my story and to read about others who suffered for many years the same indignities as myself. Being part of PatientsLikeMe has taken away my feelings of isolation. It gives patients like myself a positive outlook for the future, with the ability to handle my condition, to communicate with my moderator and with other patients. I will always be grateful to Jenni and others for the work they do in treating all patients with consideration and care, giving us all a brighter future. - Justin van Kampen

16. PatientsLikeMe What do patients think? It’s been nice to connect with others on PatientsLikeMe. For years I didn’t know if what I was feeling at times was normal or not, or if it was part of AKU. I find everyone is supportive and it is a place to be honest about how you are feeling, positive or negative. I like the forums to ask questions and to share things you may have not considered that may help make life easier or the pain more manageable and people are always happy to share what works for them. - Carolyn Boote

17. PatientsLikeMe What do patients think? PatientsLikeMe, AKU Society staff and other patients have helped me to not feel completely alone, and to feel hopeful for the future. I look forward to the medical community recognising and using the data we update in order to better understand what we go through on a daily basis. I look forward to the future and seeing how we can ALL help each other. - Donna Marie

18. PatientsLikeMe What do carers and families think? When my son was diagnosed with AKU, I felt very lost. I felt like there weren't many people who really understood what our family was going through. I quickly found the AKU Society in the UK; it has been a great resource and I quickly joined up to Patients Like Me when it was introduced. As a parent you want to do all you can to help your children, but I felt isolated and unsure of how I could help. Patients Like Me has helped elevate that feeling. I can communicate with others who have the same disease as my son and I can arm myself with information from them - which I will one day pass onto him. As he gets older, he can use this amazing tool himself to contact people who are battling the same disease. - Alycia Kearns

19. PatientsLikeMe How does it work? This 3-minute video from PatientsLikeMe gives an overview of how their communities work.

20. PatientsLikeMe Track your health Track emotional as well as physical symptoms Click to see a whole previous history of this specific symptom Rate the severity of your symptoms Clicking arrow lists treatments for specific symptom Complete regular QOL surveys for doctor to see and you to track Add InstantMe’s with explanations to track general feelings

21. PatientsLikeMe Track your health Evaluate your treatments and view what other people have thought about them

22. PatientsLikeMe Connect with others Connect with patients from all over the world Ask questions about AKU Updates about PatientsLikeM e Reliable information about services, AKU and general health Meet and speak to others affected by AKU Share ideas

23. PatientsLikeMe Connect with others Connect with patients from all over the world Comment on users’ profiles and on their updates Message people privately Follow other users’ to get update on their activities and see how they are

24. PatientsLikeMe How to improve it? Doctors, specialists and consultants are going to be signing up in the next year to use the community and offer advice to patients and families Bringing in translation services for the community PatientsLikeMe leaflets to use AKU specific data not generic How else could our community be improved?

25. DevelopAKUre.eu Our clinical trials microsite Where people can register their interest: primarily for patients interested in taking part Patient stories Video diaries Fact & figures AKU communities Info on each trial Info on the trial sites FAQ’s Trial blog & updates Key facts About the clinical trial programme and the DevelopAKUre consortium Twitter feed with the hashtag #DevelopAKUre

26. DevelopAKUre.eu Our clinical trials blog Find out trial blog here, updated biweekly Learn more about clinical trials and research in general, for example: Post explaining randomisation Post explaining how clinical trial participants are Why we have a non-treatment group Also read: Patient stories who are taking part in the trials About conferences we’ve attended Fundraising for the trials Updates from consortium meetings

27. RareConnect Get in touch with AKU sister society employees and volunteers from all over the world Speak to patients from across the world 5 different languages available (English, French, Spanish, Italian, German) Share your story Start discussions Get your questions answered by specialists, other patients and families Speak to AKU Society employees on a regular basis

28. RareConnect The homepage for the AKU community Read others stories, understand the disease more and tell your own story Start discussion s and meet other patients Learn about AKU from reliable resources See who else is using the community

29. Campaigns Our online presence also makes fundraising and awareness campaigns an easier, cheaper option, such as the Indiegogo campaign and the ‘Help Us Cure Black Bone Disease’ photo campaign.

30. Any questions? Thanks for listening!