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How to start an awareness day for
your rare disease
RareConnect Webinar
| 4th May | Barcelona
• EURORDIS initiative since 2010
• Platform for rare disease patients and patient
organizations to develop online communit...
• Allows people living with RD to connect with
others, access quality information and participate
in community-driven know...
https://www.rareconnect.org/topics
https://www.rareconnect.org/topics/questions
/eu/836/how-do-i-set-up-a-patient-
organisation-for-my-rare.html
List of rare disease awareness days
http://blog.rareconnect.org/tip-of-the-week/rare-disease-
awareness-days/
http://blog.rareconnect.org/tip-of-the-week/rare-disease-awareness-days/
Ehlers-Danlos Syndrome
Syringomyelia
GBS + CIDP
Huntington’s Disease
Neurofibromatosis
Vasculitis
Von-Hippel Lindau disease
Williams syndrome
Any best practices?
• Many rare diseases have an awareness day to build
their community and supporters
• How to create an ...
Goals of a patient-led awareness day
• Unite your community and supporters, promote your
patient groups projects
• Shed li...
What’s the point?
1 disease: 1 day or month per year
• Work with the other patient associations around the
world on creating 1 awareness day...
Combine online and real world events
• In addition to social media communication, can you
host a conference or online webi...
How do I share a live video on
Facebook?
• This feature isn't available to everyone right now.
• To start a live broadcast...
Create shared visual identity
• Translate if needed
Ways to get involved
Theme and Slogan
“Low cost" best practice: create a "Theme" and a
"Slogan" which everyone uses.
Logo+ Theme+ slogan as sta...
Be a World CDG Awareness Day Advocate
Do like Pf Eva Morava and many friends and families:
Print a handprint that I am att...
1 hashtag for the day
• Before choosing a hashtag, make sure its not already
being used for other purposes
• Keep it simpl...
Share the facts
Example factsheets
• Rare Disease Day
http://www.rarediseaseday.org/article/what-is-a-rare-disease
• International atypica...
Create a basic video
Toolkit for an awareness day
Example toolkits
NF Awareness Month
http://www.ctf.org/images_12/Awareness/2016_NF_Awar
eness_Month_Toolkit_FINAL_sm.pdf
R...
Thunderclap
http://blog.rareconnect.org/tip-of-the-week/using-thunderclap-to-unite-
your-crowd-on-social-media/
Find the slides and recording
http://blog.rareconnect.org/best-practices/rareconnect-
webinar-how-to-start-an-awareness-da...
FIND US
www.rareconnect.org
facebook.com/RareConnect
twitter.com/Rareconnect
Instagram.com/RareConnect
E-MAIL: robert.plet...
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RareConnect.org webinar: How to start an awareness day for your rare disease

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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/

Published in: Government & Nonprofit

RareConnect.org webinar: How to start an awareness day for your rare disease

  1. 1. How to start an awareness day for your rare disease RareConnect Webinar | 4th May | Barcelona
  2. 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. 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. 4. https://www.rareconnect.org/topics
  5. 5. https://www.rareconnect.org/topics/questions /eu/836/how-do-i-set-up-a-patient- organisation-for-my-rare.html
  6. 6. List of rare disease awareness days http://blog.rareconnect.org/tip-of-the-week/rare-disease- awareness-days/
  7. 7. http://blog.rareconnect.org/tip-of-the-week/rare-disease-awareness-days/
  8. 8. Ehlers-Danlos Syndrome
  9. 9. Syringomyelia
  10. 10. GBS + CIDP
  11. 11. Huntington’s Disease
  12. 12. Neurofibromatosis
  13. 13. Vasculitis
  14. 14. Von-Hippel Lindau disease
  15. 15. Williams syndrome
  16. 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. 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. 18. What’s the point?
  19. 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. 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. 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. 22. Create shared visual identity • Translate if needed
  23. 23. Ways to get involved
  24. 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. 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. 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. 27. Share the facts
  28. 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. 29. Create a basic video
  30. 30. Toolkit for an awareness day
  31. 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. 32. Thunderclap http://blog.rareconnect.org/tip-of-the-week/using-thunderclap-to-unite- your-crowd-on-social-media/
  33. 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. 34. FIND US www.rareconnect.org facebook.com/RareConnect twitter.com/Rareconnect Instagram.com/RareConnect E-MAIL: robert.pleticha@eurordis.org

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