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 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

• 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

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 engaging, informative, awareness day with limited resources and maximum impact?

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

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 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

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

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.

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 starting point to build campaign around

More than a toolkit, its the community building and worldwide unified message and visual identity.

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.

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.

Share the facts

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/Dispelling-the-Myths-About-Ichthyosis/page_id/1201

• Epidermolysis Bullosa Awareness Weekhttp://www.debra.org/epidermolysis-bullosa-awareness-week

Create a basic video

Toolkit for an awareness day

Example toolkits

NF Awareness Monthhttp://www.ctf.org/images_12/Awareness/2016_NF_Awareness_Month_Toolkit_FINAL_sm.pdf

Rare Disease Dayhttp://www.rarediseaseday.org/downloads

International atypical HUS day:http://atypicalhus.ning.com/page/ahus-awareness-day

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-day-for-your-rare-disease/

FIND US

www.rareconnect.org

facebook.com/RareConnect

twitter.com/Rareconnect

Instagram.com/RareConnectE-MAIL: robert.pleticha@eurordis.org