RareConnect has been collecting the dates of different global and national awareness days for different rare diseases in this blog post: http://blog.rareconnect.org/tip-of-the-week/rare-disease-awareness-days/ Many patient groups ask us how to start an awareness day for their individual disease. This presentations discusses best practices in starting an awareness day for your community. Highlights of what works to bring together your community for a disease awareness day. Watch the entire webinar that this presentation was part of here: http://blog.rareconnect.org/best-practices/rareconnect-webinar-how-to-start-an-awareness-day-for-your-rare-disease/

1. How to start an awareness day for
your rare disease
RareConnect Webinar
| 4th May | Barcelona

2. • EURORDIS initiative since 2010
• Platform for rare disease patients and patient
organizations to develop online communities
and conversations across continents and
languages
• Goal: to provide a safe, accurate and lively
online platform that helps meet the needs of
patients and families living with a Rare
Disease
RareConnect.org

3. • Allows people living with RD to connect with
others, access quality information and participate
in community-driven knowledge generation
• 84 disease-specific online communities that
enable patients to meet, share stories and learn
from a credible base of disease-specific
information while enhancing the visibility and
potential of patient organizations as a valued
resource
RareConnect.org

4. https://www.rareconnect.org/topics

5. https://www.rareconnect.org/topics/questions
/eu/836/how-do-i-set-up-a-patient-
organisation-for-my-rare.html

6. List of rare disease awareness days
http://blog.rareconnect.org/tip-of-the-week/rare-disease-
awareness-days/

7. http://blog.rareconnect.org/tip-of-the-week/rare-disease-awareness-days/

8. Ehlers-Danlos Syndrome

9. Syringomyelia

10. GBS + CIDP

11. Huntington’s Disease

12. Neurofibromatosis

13. Vasculitis

14. Von-Hippel Lindau disease

15. Williams syndrome

16. Any best practices?
• Many rare diseases have an awareness day to build
their community and supporters
• How to create an engaging, informative, awareness
day with limited resources and maximum impact?

17. Goals of a patient-led awareness day
• Unite your community and supporters, promote your
patient groups projects
• Shed light on the experiences of people living with
the disease
• Educate the general public or community where
person with a rare disease is living on their condition
and strengths
• Fundraise
• Unite the patient groups for your disease and create a
community

18. What’s the point?

19. 1 disease: 1 day or month per year
• Work with the other patient associations around the
world on creating 1 awareness day globally for the
disease
• Rare diseases already mean
fragmentation…awareness days should bring your
global community of patients, families, and
supporters together under 1 message

20. Combine online and real world events
• In addition to social media communication, can you
host a conference or online webinar on the day?
• Can you LiveStream (Facebook Live) your
conference?
• Other event ideas: walk/run, school presentations,
morning tea

21. How do I share a live video on
Facebook?
• This feature isn't available to everyone right now.
• To start a live broadcast:
• Log into the Facebook iOS app or Facebook Android app
• Tap at the top of your Timeline, News Feed or Page
• Tap
• Write an optional description for your broadcast
• Tap Go Live to begin your broadcast
• When you want to end your broadcast, tap Finish.
• Your broadcast can be no longer than 90 minutes. When you end your broadcast, it'll stay on your Timeline or Page like any
other video.

22. Create shared visual identity
• Translate if needed

23. Ways to get involved

24. Theme and Slogan
“Low cost" best practice: create a "Theme" and a
"Slogan" which everyone uses.
Logo+ Theme+ slogan as starting point to build
campaign around
More than a toolkit, its the community building and
worldwide unified message and visual identity.

25. Be a World CDG Awareness Day Advocate
Do like Pf Eva Morava and many friends and families:
Print a handprint that I am attaching in this email or
available HERE, take a photo and share our cause by
submitting your photo HERE and through Facebook and
Twitter. Include #WorldCDGDay2016 when posting.

26. 1 hashtag for the day
• Before choosing a hashtag, make sure its not already
being used for other purposes
• Keep it simple and short, ex.
#InternationalRareDiseaseAwarenessDay is too long!
• Start publicizing the hashtag early to make sure
people include it in their posts. Don’t forget to use it
in all your posts.

27. Share the facts

28. Example factsheets
• Rare Disease Day
http://www.rarediseaseday.org/article/what-is-a-rare-disease
• International atypical HUS day:
http://ow.ly/4njrJd
• Icthyosis:
http://www.firstskinfoundation.org/content.cfm/Ichthyosis/Dis
pelling-the-Myths-About-Ichthyosis/page_id/1201
• Epidermolysis Bullosa Awareness Week
http://www.debra.org/epidermolysis-bullosa-awareness-week

29. Create a basic video

30. Toolkit for an awareness day

31. Example toolkits
NF Awareness Month
http://www.ctf.org/images_12/Awareness/2016_NF_Awar
eness_Month_Toolkit_FINAL_sm.pdf
Rare Disease Day
http://www.rarediseaseday.org/downloads
International atypical HUS day:
http://atypicalhus.ning.com/page/ahus-awareness-day

32. Thunderclap
http://blog.rareconnect.org/tip-of-the-week/using-thunderclap-to-unite-
your-crowd-on-social-media/

33. Find the slides and recording
http://blog.rareconnect.org/best-practices/rareconnect-
webinar-how-to-start-an-awareness-day-for-your-rare-
disease/

34. FIND US
www.rareconnect.org
facebook.com/RareConnect
twitter.com/Rareconnect
Instagram.com/RareConnect
E-MAIL: robert.pleticha@eurordis.org