Rare Disease Day occurs each year on the last day of February. It’s a great day for rare disease organizations to rally around, fundraise and spread awareness for the people that they champion and the cause that they represent.

Plan ahead this year and create a marketing campaign around Rare Disease Day. You can leverage the weeks or an entire month leading up to it to take advantage of the awareness day and shine the spotlight on your community.

While this post is targeted at rare disease nonprofits celebrating Rare Disease Day, the campaign and tips can easily be adapted to any awareness campaign your organization may be running. Check out our more general tips on planning an awareness campaign.

Planning Your Rare Disease Day Campaign

Before we work through the components of your Rare Disease Day campaign, it’s helpful to answer a few questions about your audience, messaging and goals for the campaign.

  • Who will your target audience be? This could be all those affected by a specific disease and their loved ones, current supporters, the medical community or whoever else you’re hoping to reach through the campaign.
  • What are your goals for the campaign? Set specific goals around things like website traffic, donations, advocacy and other actions taken on your site or elsewhere.
  • What will the calls to action be? Make sure that calls to action used in your campaign messaging are strategic and align with the goals you’ve set.
  • What will the timing look like? You might run a one-day campaign on Rare Disease Day or promote your campaign throughout the entire month of February.
  • Will there be a theme? It can be helpful to center your campaign around a specific theme or slogan, as shown in the examples below.
  • What are the key messages? Pinpoint 3-4 key statements to be paired with your calls to action for the campaign.
  • What about photos or graphics? Start collecting photos and graphics to use within website content, emails and on social media. You can also consider shareable images that you’d like your community to distribute as they promote the campaign.
  • Are there important dates you’ll need to note? Aside from Rare Disease Day itself, you might have a campaign kick-off day, a webinar or other events that’ll need to be included.
  • How will you keep supporters involved after Rare Disease Day? Keep retention and ongoing engagement efforts in mind as you piece together your plan.

Campaign resources

Each year, EURORDIS – Rare Diseases Europe and the National Organization for Rare Disorders (NORD) partner up to share resources for organizations participating in Rare Disease Day, including downloadable images for social media, flyers and toolkits. NORD also shares some additional resources specific to their Rare Disease Day celebrations in the United States.

Rare Is Many rare disease graphic from Rare Disease Day resources
Statistic rare disease graphic from Rare Disease Day resources
Share Your Colours rare disease graphic from Rare Disease Day resources

If this is your first time running a campaign for Rare Disease Day, leaning on these resources can give you a leg up — especially when it comes to a theme for your campaign and graphics to share on social media.

Rare Disease Campaign Components

For your first Rare Disease Day campaign, start simple and use the marketing channels that you already have. We’ve outlined a campaign for nonprofits with a website, blog, active social media accounts, an email list and peer-to-peer fundraising capabilities.

If your organization doesn’t use one of these marketing channels, cut it from your campaign. And if there are tactics or channels that you’re comfortable using but that aren’t included in our campaign, feel free to add them in.

Landing Page

Use a landing page on your website as the hub of your Rare Disease Day campaign, sending visitors here from a variety of other places to get involved. It can house all of the details of your campaign, including key messages and calls to action.

  • Add a video that highlights the rare disease and how your nonprofit supports its community.
  • Highlight events of the campaign and how supporters can join in, like signing up for webinars or registering for a day of advocacy.
  • If your organization has an ambassador program or supports peer-to-peer fundraising, include details for getting involved through the campaign.
  • Highlight any partners or sponsorships involved in the campaign.
  • Note and link to updates or blog posts related to the campaign.

However, if your campaign will be on the shorter side or just one day, consider using a blog post to share information about your campaign and ways to get involved instead of building out a landing page.

Blog Posts

You can also use your blog to publish posts related to your campaign, including relevant patient or family stories, educational resources or research updates about the rare disease community that you support. Although this depends on your typical blog posting schedule, one to two posts are generally sufficient for a month-long campaign.

You can then link to the posts on the landing page and share them with your email and social media audiences to mix up your content throughout the length of your campaign.

Social Media

Plan out social media posts to pepper into your regular posting schedule leading up to Rare Disease Day. Keep the campaign content varied with posts announcing your campaign kick-off, giving updates about the rare disease community that you support, highlighting and linking to blog posts, noting events and webinars or sharing stories.

To expand the reach of your posts, encourage dedicated supporters to share the posts and details of your campaign with their own followers. You might even include a downloadable social media graphic for them to use within a blog post or on your landing page. And don’t forget to remind them to tag your organization and include any hashtags that you’re using for your campaign!

Peer-to-Peer Fundraising

Peer-to-peer fundraising campaigns can be especially fruitful around awareness days like Rare Disease Day. In our experience, there are likely members of your community who are willing to share their personal experiences to raise awareness and funds as part of a campaign.

If your organization has a process in place for these campaigns (that includes a plan for fundraiser retention), encourage previous fundraisers and engaged supporters to run their own campaigns around Rare Disease Day. Provide them with template content, photos and a promotional plan and let them get to work.

Emails

Emails are a proven way for nonprofits to inspire action (and donations!) from supporters. To keep things simple this first time around—especially if you don’t often email your supporters—plan for two emails in a month-long Rare Disease Day campaign, which you can work into your standard email communications for February.

  • One email to announce your campaign with the key messages, details and a call to action
  • One email on Rare Disease Day to drive home the importance of the day and ask for one key action

To build more emails into your campaign, there are opportunities to further engage the active folks on your email list through segmentation. For example, after the first email, you might create a follow-up email for those who showed interest in the campaign by clicking the email. They’d likely be more inclined to take an action like signing up for a webinar or participating in an advocacy day.

And if you’re planning to include blog posts in your strategy, you can add emails to highlight those for your email audience, too.

Rare Disease Day Campaigns

If you’re like me, reading about how to run a Rare Disease Day campaign is not nearly as helpful as seeing what other organizations like yours have done in past years.

Screenshot of the Cure SMA Rare Disease Day landing page

Cure SMA

The Cure SMA campaign for Rare Disease Day used a landing page on their website and “Redefining Rare” theme to encourage participation on social media and beyond, including prompts for videos and posts, plus fundraising calls to action.

Screenshot of the KIF1A.ORG rare disease day event page

KIF1A.ORG

On a simple yet engaging event landing page, the KIF1A.ORG campaign made use of the free Rare Disease Day graphics and encouraged their community to share their stories and support their mission.

Screenshot of the Myositis Support and Understanding Rare Disease Day landing page

Myositis Support and Understanding

The Myositis Support and Understanding campaign used the unique theme “MSU is a forest” and includes detailed information about the support that they provide to their community, including ways to get involved in the campaign and spread awareness about their work that tie back to the theme.

Screenshot of the NFED Ectodermal Dysplasias Awareness Month landing page

National Foundation for Ectodermal Dysplasias

The National Foundation for Ectodermal Dysplasias dubbed February Ectodermal Dysplasias Awareness Month and celebrates their rare disease community all month long with events, opportunities to connect on social media, and ways to join in their advocacy work.

However your campaign comes together this year, use Rare Disease Day as an opportunity to build awareness about the syndrome or condition that you’re focused on and the people that you champion — all while moving your mission forward.

How have you celebrated Rare Disease Day at your organization in the past? Any additions to our campaign or landing pages to shout out? I’d love to check out your campaign if you’ll share it in the comments below.

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