Rare Disease Diversity Survey Social Media Toolkit

The National Organization for Rare Disorders (NORD^®) and the Rare Disease Diversity Coalition (RDDC) have developed a first-ever national survey of underrepresented rare disease patients and caregivers to better understand their unique perspectives and experiences in accessing and affording health care.

This massive, innovative endeavor is a joint venture between the two storied organizations and will help to identify and address gaps faced by rare disease patients, as well as help amplify.

This effort will be a true partnership with the entire rare disease community, which is why NORD has developed a social media toolkit to provide YOU with the tools to help us share this opportunity for your community to be heard, included, and counted, and help drive active participation in the survey efforts.

Take the Survey

Get Started

Here are some of NORD’s and RDDC’s social media profiles. You can mention us in your posts or refer your followers to our social channels for more information:

Facebook: @NationalOrganizationforRareDisorders | @BlackWomensHealthImperative
Twitter: @RareDiseases | @BlkWomensHealth | @rarediseasediv1
LinkedIn: @NationalOrganizationforRareDisorders | @BlackWomensHealthImperative
Instagram: @Nord_Rare | @RareDiseaseDiversity
Hashtags: #RareDiseaseSurvey, #RareDiseaseDiversitySurvey, #RDDS, #TogetherWeAreStrong

Social Media Graphics

NORD has created social media images you may use to raise awareness and start conversations online. Please feel free to download the zipped folder and share the assets across your social media accounts.

Helpful Hints

Add an image to your post. You can use one of the assets that we’ve created OR get creative. Have fun with it! You can share a video of yourself or your family to really connect with your viewers as well.
Tagging followers, public figures, leaders, celebrities, and more will encourage additional participation and engagement. If you know someone who may be interested in participating in the survey, tag them, and spread the word. Social media should be social! Try to engage with your followers as much as you can. If you’re getting questions and comments under your posts, respond and interact with them.
If you can, include a call to action in your post encouraging people to fill out and share the survey after completing. The best way to raise awareness and gather interest is to spread the word and encourage others to join. Make sure you use clear wording, so your followers know what you’re asking them and how they can join in on this critical rare disease work.
Engage with NORD and the RDDC! Both organizations will be posting frequently on our social media channels to promote this survey. We would love to see you commenting under posts, sharing the post with friends and family, or tagging your favorite celebrity or elected official under our posts. Your incredible efforts do not go unnoticed, and we rely on you to help bring awareness to the rare disease community.
Use the “Live” feature on your social media platforms! Go live for a few minutes to share your rare disease story or how this work is important to you/your family/organization.
A character limit is the maximum amount you can write in your post. Spaces, letters of the alphabet, numbers, and punctuation all count toward a character limit. Here is a quick character limit guide, though posts that are shorter tend to perform better:
- Twitter: 280 characters
- Instagram: 2,200 characters
- LinkedIn: 3,000 characters
- Facebook: 5,000 characters

Sample Posts

Twitter

@DiversityRare, @rarediseasediv1 and @RareDiseases have teamed up on a new survey to amplify
marginalized #RareDisease voices! Join [me/my family/my organization] in pursuing an improved future for our community of those living with rare disease and their families by completing and sharing the survey: https://www.rarediseasediversitysurvey.org/

New @DiversityRare & @RareDiseases survey aims to uncover gaps & barriers experienced by
underrepresented communities. Together, we can identify and combat longstanding barriers
experienced by the #RareDisease community! Participate and pass on: https://www.rarediseasediversitysurvey.org/

NEW #RareDiseaseDiversitySurvey from the Rare Disease Diversity Coalition (@DiversityRare) and NORD (@RareDiseases) aims to amplify diverse perspectives in #RareDisease. Take the survey here: https://www.rarediseasediversitysurvey.org/

I’ve taken the #RDDS survey, and I challenge you to do the same: [link] The Rare Disease DiversityCoalition (RDDC) and National Organization for Rare Disorders (NORD) have teamed up to develop a first-ever national survey of underrepresented #RareDisease patient and caregiver perspectives. The survey will help to inform future efforts by RDDC to bring rare disease experts, health and diversity advocates, and industry leaders together to identify solutions, overcome barriers faced by rare disease patients and their families, and help amplify diverse and marginalized perspectives in rare disease advocacy and research. https://www.rarediseasediversitysurvey.org/

The #RareDiseaseDiversitySurvey is here! #RareDisease advocacy leaders, #caregivers and #patients, please take a few minutes to share your voice, insights, and experiences to help [tag NORD] and [tag RDDC] uncover gaps and barriers to access experienced by underrepresented communities. This innovative effort can help us make huge strides for individuals and families suffering from rare disease. https://www.rarediseasediversitysurvey.org/

I just filled out the #RareDiseaseDiversitySurvey from our friends at [tag RDDC] and [tag NORD]. I am so excited and hopeful about this campaign to engage members of the #RareDisease community, identify gaps and barriers to #healthcare coverage, and elevate marginalized voices. Join me and take the survey so we can improve the present and secure the future of marginalized communities impacted by rare disease: https://www.rarediseasediversitysurvey.org/

SHARE YOUR RARE DISEASE JOURNEY: [tag RDDC] and [tag NORD] have developed a first-ever national
survey of underrepresented #RareDisease patients and caregivers to hear their stories, understand their experiences in accessing health care, and uncover gaps and barriers to care. By sharing your experiences, you can help to advance efforts to support underrepresented/marginalized members of the rare disease community: https://www.rarediseasediversitysurvey.org/

Facebook

CALLING MEMBERS OF THE RARE DISEASE COMMUNITY: MAKE YOUR VOICE HEARD! The Rare Disease
Diversity Survey is an unprecedented joint venture by the Rare Disease Diversity Coalition (RDDC) and NORD to identify barriers faced by rare disease patients and their families and to help amplify diverse and marginalized perspectives in rare disease advocacy and research. Help support these critical efforts by taking the survey today and encouraging others to do the same! https://www.rarediseasediversitysurvey.org/

I’m proud to share that I have taken the Rare Disease Diversity Survey. I can’t wait to join [tag RDDC] and [tag NORD] in elevating and empowering rare disease patients and their families. Help us build a more equitable future for the over 25 million Americans currently living with a rare disease by complete the survey and sharing with your own friends and networks today! https://www.rarediseasediversitysurvey.org/

[tag RDDC] and [tag NORD] have teamed up to develop a first-of-its-kind national survey of underrepresented rare disease patients and caregivers to hear their stories, understand their experiences, and uncover gaps and barriers to accessing care. lend your voice to these critical efforts to amplify diverse perspectives in rare disease communities by taking the survey today: https://www.rarediseasediversitysurvey.org/

Instagram

Note: Make sure to put the link to the survey in your Instagram bio.

I’ve taken the #RareDiseaseDiversitySurvey, and I challenge you to do the same. The @RareDiseaseDiversity Coalition (RDDC) and National Organization for Rare Disorders (@NORD_Rare) have teamed up to develop this first-ever national survey of underrepresented #RareDisease patient and caregiver perspectives. The survey will help to identify solutions, overcome barriers faced by rare disease patients and their families, and help amplify diverse and marginalized perspectives in rare disease advocacy and research. Take the survey at the link in bio. (https://www.rarediseasediversitysurvey.org/)

The #RareDiseaseDiversitySurvey is here! #RareDisease advocacy leaders, #caregivers and #patients, please take a few minutes to share your voice, insights, and experiences to help @NORD_Rare and @RareDiseaseDiversity uncover gaps and barriers to access experienced by underrepresented communities. This innovative effort can help us make huge strides for individuals and families suffering from rare diseases. Take the survey at the link in bio. (https://www.rarediseasediversitysurvey.org/)

SHARE YOUR RARE DISEASE JOURNEY: @RareDiseaseDiversity and @NORD_Rare have developed a first-ever national survey of underrepresented #RareDisease patients and caregivers to hear their stories, understand their experiences in accessing #healthcare, and uncover gaps and barriers to care. By sharing your experiences, you can help to advance efforts to support underrepresented/marginalized members of the rare disease community. Visit the link in bio. (https://www.rarediseasediversitysurvey.org/)