WFH NETWORK

World Hemophilia Day social media toolkit now available

World Hemophilia Day 2019 is coming soon! The WFH encourages members of the community, partners and national member organizations (NMOs) to engage with the community on April 17 and let your voice be heard! You can do this by posting your stories and your words of encouragement and hope on social media. The WFH is active on Facebook, Twitter and LinkedIn, and we would love to hear from you on those platforms.

If you’re interested in finding out the best way to get your voice heard on April 17, you’ve come to the right place. Below you’ll find the World Hemophilia Day social media toolkit which covers the different aspects of posting on social media in the most effective way possible.

Since 1989, patient groups worldwide have annually marked World Hemophilia Day on 17 April to raise awareness and understanding of hemophilia and other bleeding disorders. The date was chosen in honor of the World Federation of Hemophilia founder, Frank Schnabel, who was born on that day.

World Hemophilia Day aims to:

  • Be the leading platform to promote hemophilia advocacy efforts
  • Promote the importance of taking coordinated and concerted actions to increase the number of patients diagnosed around the world and to strive to reach “Treatment for all”
  • Draw attention to the key issues and put hemophilia and bleeding disorders in the spotlight

Theme and key messages

This April 17th, we will be focusing on spreading the message that Outreach & Identification are “the first step to care”.

We will encourage our community to:

  • Share diagnosis stories
  • Share their efforts to increase outreach and identification across the world
  • Celebrate local victories to access treatment

worldhemophiliaday.org

Every year, the WFH offers the bleeding disorders community a unique and intimate platform to come together and celebrate the day. Community members share pictures, success stories, challenges to support each other in their advocacy efforts. The specific call to action for this platform is to:

  • Spread the word about World Hemophilia Day
  • Encourage people to share their WHD awareness activities

For more information, check out www.worldhemophiliaday.org.

Light it up Red!

This year again, over 70 landmarks will take part in the “Light it up Red” campaign to show their support for World Hemophilia Day.

Check out our Facebook page to learn more.

Fun and easy ways to get involved

  • Raise awareness on social media
  • Ditch your lunch/go for brunch. Choose one day to skip your lunch in honor of your loved one with hemophilia. Ask your friends, family and co-workers to join you and donate what they would have spent on lunch to hemophilia research.
  • Educate. Give a presentation, organize a “Learn about hemophilia” event at your child’s school or a group you belong to!
  • Ask your HTC to participate in our World Bleeding Disorder Registry
  • Organize a fun group activity in your town or at your workplace
  • Host
    • a meeting, workshop or conference
    • an art, photography or essay-writing competition
    • a face painting event to #ShowYourRed
  • Plan a sporting or fundraising event

Once you have organised your event, share it on the World Hemophilia Day platform so it can be added to the map showing events taking place worldwide. Don’t forget to upload photos and videos of your event afterwards!

Use WHD2019 hashtags

#WorldHemophiliaDay, #WHD2019, #hemophilia, #bleedingdisorders, #TreatmentforAll #ShowYourRed #LifeinRed #LightItUpRed #KnowYourRed

Change your profile picture

  • Download our WHD banner and frame
  • Take a red selfie and share it on social media

Spread the word

  • Share this year’s WHD key messages
  • Promote this year’s WHD website
  • Promote the campaign on social media – like, share and retweet!
  • Promote the campaign on your website
  • Share the official poster
  • Share WHD resources on your website or through social media

Dedicate your Facebook feed to WHD all April

Go live!

Go live on FB for a few minutes to share your personal or organizational story with hemophilia. You can choose to focus on your diagnosis story (this year’s theme) or just share what life is like with a rare disease like hemophilia.

Light It Up Red on social media!

  • Persuade a local representative or personality to wear red on April 17 and share pictures
  • Form a human blood drop of people wearing red and share pictures
  • Challenge your coworkers or schoolmates to wear red for the day
  • Organize an event or take a picture in front of one of the 70 landmarks that will be lit in red on April 17
  • Organize a red challenge: wrap a local landmark, a small statue, your desk, etc. in red and share pictures

Tips for organizing your own social media campaign 

  1. Develop content around the theme. Plan your posts in advance. Create a calendar with the posts and channels where they will be shared. Use content that is easy to share and develop different formats (short stories, videos, etc.). For maximum impact, share the right hashtags.
  2. Choose the most relevant channels for your audience to make sure they will engage with your content
  3. Have a clear call to action: your audience probably wants to support you, just let them know how: share a story, post a picture in red, etc.
  4. Engage
    • Comment on World Hemophilia Day threads
    • Tag friends who would be interested in learning more about your experience with hemophilia
    • On Facebook, share your posts in private groups to increase reach and visibility
    • On Twitter, tag personalities you would like to make aware of hemophilia

Example posts

#WorldHemophiliaDay is April 17! Show your support to get #TreatmentforAll by sharing this infographic!

#WorldHemophiliaDay is about celebrating the bleeding disorders community. Retweet/share if someone in your family is living with #hemophilia #WHD2019

Would your doctor know if you had #hemophilia? Take our quiz today! #WHD2019 #identification is the first step to care!

This year, I am showing my support for #WorldHemophiliaDay, a day that is very important for me and over 400,000 of people across the world. #Lifeinred (upload a photo) #WHD2019

Today, I am sharing a picture in red to show support for a disease very dear to my heart! Please do the same by sharing a photo of yourself or your organization in red! #WorldHemophiliaDay #WHD2019

Let us know what you are planning!

We want to support you and help you amplify your efforts to create the buzz around your events. Please share all your events with nvisani@wfh.org

WFH Channels

Downloadable WHD 2019 resources

For any questions, feel free to contact Noelle Visani, Communications Officer  nvisani@wfh.org.

If you have any questions, don’t hesitate to contact Noelle Visani, Communications Officer, at nvisani@wfh.org.