Help us reach FDA for Rare Disease Day
We’ve prepared a set of social media posts designed to be used by Barth syndrome patients, families, friends, and advocates who want to support the community’s efforts around Rare Disease Day (February 29, 2024).
Some will be attending events in person in Washington, D.C., but you can support the cause from any location. All voices are needed during this critical time as we continue to advocate for a fair, equitable, and timely FDA review of the only investigational treatment for Barth syndrome – and as we ask Congress to hold FDA accountable to listen to patients and families.
Please help support the Barth Syndrome community by taking a few minutes to post your story on Social Media. If you have a story to tell, we encourage you to create and share your story in video form.
Create & Share Your Video Story
By following the steps below, you can create a video about your family’s experience with Barth syndrome and why you believe FDA should exercise a fair, appropriate review of the only investigational treatment for this life-threatening ultra-rare disease.
Example Video Story: https://vocalvideo.com/v/not-too-rare-to-care-jamie-dubuque
Tips for recording the video:
- Pick a quiet and well-lit place.
- Relax & be yourself – it doesn’t have to be perfect.
- You can redo your recording if you’re not happy with it.
- You can record yourself in either video or audio-only.
- You can record using a computer or smartphone. If using a smartphone, consider using a phone stand or other method to ensure your phone doesn’t move around while you’re recording.
Step 1.
Visit: https://vocalvideo.com/c/not-too-rare-to-care
Tell your story by recording short video or audio clips via your browser. You will not need to download or install anything.
When ready to begin, click the orange “Let’s Go” button.
Step 2.
Record your answer to question 1: “How are you impacted by Barth Syndrome?”
If prompted, grant your browser access to your microphone and/or camera.
After you’re finished, you can review your recording. Click either “Redo” or “Use Audio/Video”.
Step 3.
Record your answer to question 2: “What message do you have for policymakers?”
Step 4.
Record your answer to question 3: “Why does this matter to you?”
Step 5.
Provide your name and email address. Note that your email address will be kept private and never shared.
Step 6.
A member from our communications team will email you a link to your video in about 3-days. Share your story on social media! Leverage and personalize the draft posts below.
Facebook/Instagram/LinkedIn
Congress and [tag FDA], we are calling on you to consider the lives and experiences of families facing Barth syndrome, a life-threatening ultra-rare disease. We need action now to save lives. We need a fair, equitable review of the only investigational treatment for Barth syndrome. We are #NotTooRareToCare. To find out why, listen to my family’s story. [Link to your video story]
X (Twitter)
Congress and @US_FDA, Barth syndrome families need action now to save lives. We need a fair, equitable review of the only investigational treatment for this life-threatening #RareDisease. We are #NotTooRareToCare. Listen to my family’s story: [Link to your video story]
What you need to do
- Download an image for the post by right-clicking it and saving it onto your desktop.
- Log in to your Facebook, Instagram or X (Twitter) account
- Create a new post
- Copy and paste one of the messages below into the post – or create your own message that includes the hashtags #NotTooRareToCare, #RareDiseaseDay or the FDA tag for the platform you’re using
- Upload the image that you downloaded to your Desktop
- Submit the post
Tips for Posting on Social Media
- Tag FDA in posts designed to share the community’s voice, the need for treatment, and patients’ and caregivers’ experiences with Barth syndrome. The FDA has different links on each platform:
- Facebook: U.S. Food and Drug Administration
- X (formerly Twitter): @US_FDA
- Instagram: @FDA
- LinkedIn: @FDA
- Personalization: Adding your own views, stories and opinions to the example posts we’ve written below will help increase the impact. We have also provided graphics for you to use, and you can consider sharing family photos as well if you are comfortable doing so.
- Hashtags: Use the hashtags #NotTooRareToCare and #RareDiseaseDay to drive
campaign visibility and impact. - Character limits: 280 max on X (Twitter) with links automatically getting shortened to 23 characters, 700 max on LinkedIn, 2,200 max on Instagram. Short and compelling statements are often more effective than lengthy posts.
- Instagram posts require a photo, graphic, or video. But across all platforms, these visual assets make posts more compelling and tend to result in significantly higher engagement and views.
- For this reason, we encourage patients and families – whether going to D.C. or not – to create and share their personal stories via video if you are comfortable doing so. See instructions on how to create and share your video story above.
I am attending Rare Disease Week
Post 1 – Facebook/Instagram/LinkedIn
Next week I am going to Washington D.C. to advocate on behalf of [my son, NAME, and] the entire Barth syndrome community. For 5 years, we have been asking [tag FDA] to fairly and equitably review the only investigational medicine in clinical development for this life-threatening, progressive ultra-rare disease. But FDA has refused to even look at the data. 10% of the global Barth syndrome population has died while we have been waiting.
Now, we are asking Congress to hold FDA accountable to listen to patients and families.
Join our cause: https://nottooraretocare.org/
#RareDiseaseDay #RareDiseaseWeek #RareDisease #NotTooRareToCare
Post 1 – X (Twitter)
Next week I am going to Washington D.C. to advocate for a fair and equitable @US_FDA review of the only investigational medicine for Barth syndrome, the life-threatening #RareDisease that [my son] has. #RareDiseaseDay #NotTooRareToCare https://nottooraretocare.org/
Post 2 – Facebook/Instagram/LinkedIn
This week I’m in Washington D.C. to amplify the voices of the small but mighty Barth syndrome community, an ultra-rare disease that affects ~150 Americans. In just two months, we garnered nearly 20,000 signatures on a petition advocating for a fair, equitable, and appropriate [tag FDA] review of the only investigational medicine for Barth syndrome. Now we are asking Congress to hold FDA accountable to do their job and review the data! #RareDiseaseDay #NotTooRareToCare
https://vimeo.com/914024396?share=copy
Join us by writing your own letter to FDA or your Congressional representatives. Info here: https://nottooraretocare.org/
Post 2 – X (Twitter)
The @BarthSyndrome Foundation delivered a petition w/ nearly 20,000 signatures to @US_FDA advocating for a fair & equitable review of the only investigational medicine for Barth syndrome. I’m in DC asking Congress to hold FDA accountable! #RareDiseaseDay #NotTooRareToCare
Facebook/Instagram/LinkedIn
Today is #RareDiseaseDay and I’m proud to be in Washington DC to advocate for everyone facing Barth syndrome [including my son, NAME]. There are no approved treatments for this life-threatening, progressive, ultra-rare heart disease – and [tag FDA] has so far refused to even look at the data for a promising investigational treatment. We need our elected officials to hold FDA accountable by requiring them to exercise fair, equitable, and appropriate reviews of potential therapies for ultra-rare conditions like Barth syndrome. #NotTooRareToCare
Join our cause: https://nottooraretocare.org/
X (Twitter)
Today is #RareDiseaseDay & I’m in DC to advocate for Barth syndrome. There are no approved treatments for this life-threatening #RareDisease, & @US_FDA has refused to review the data for a promising investigational treatment. #NotTooRareToCare https://nottooraretocare.org/
Post 4 – Facebook/Instagram/LinkedIn
Last week, I was in Washington DC to fight for a fair and equitable review of the only investigational therapy for Barth syndrome, a life-threatening #RareDisease. I shared our family’s story with representatives of Congress to ask them to hold [tag FDA] accountable to review the data for this potentially life-changing medicine. Even though diseases like Barth syndrome affect a small number of people, Congress and FDA need to know that we are #NotTooRareToCare. #RareDiseaseDay
See my family’s story below, and join our cause here: https://nottooraretocare.org/
Post 4 – X (Twitter)
I was in DC for #RareDiseaseDay fighting for a fair, equitable @US_FDA review of the only investigational medicine for the life-threatening #RareDisease, Barth syndrome, & sharing my family’s story. Congress & FDA, we are #NotTooRareToCare. https://nottooraretocare.org/
Post 4 – Graphic C
[personalized “family story flyer,” formatted for social media]
Post 5 – Facebook/Instagram/LinkedIn
[Tag The Hill]:
Last week, I joined many #RareDisease families in Washington DC to advocate for [tag FDA] to listen to patients and caregivers, and to exercise fair, appropriate reviews of promising rare disease therapies with an understanding of the urgent need for treatments and unique challenges faced by our communities. The Barth syndrome community is one of several ultra-rare disease communities facing similar regulatory odysseys. To find out more, read the story of one of our Barth syndrome families in [tag The Hill]:
https://thehill.com/opinion/healthcare/4437637-rare-diseases-need-treatment-too/
#RareDiseaseDay #NotTooRareToCare
Post 5 – X (Twitter)
On #RareDiseaseDay, I advocated for @US_FDA to listen to patients/caregivers & exercise fair, appropriate reviews of promising #RareDisease therapies. Barth syndrome is one of many rare communities facing regulatory odysseys. Learn more in @TheHill:
https://thehill.com/opinion/healthcare/4437637-rare-diseases-need-treatment-too/
For Families Supporting from Any Location
Post 1 – Facebook/Instagram/LinkedIn
Next week is #RareDiseaseWeek, and I’m so grateful for the Barth syndrome advocates heading to Washington D.C. to advocate on behalf of [my son, NAME, and] the entire Barth syndrome community. For 5 years, we have been asking [tag FDA] to fairly and equitably review the only investigational medicine in clinical development for this life-threatening, progressive ultra-rare disease. But FDA has refused to even look at the data. 10% of the global Barth syndrome population has died while we have been waiting.
Now, we are asking Congress to hold FDA accountable to listen to patients and families.
Join our cause: https://nottooraretocare.org/
#RareDiseaseDay #RareDisease #NotTooRareToCare
Post 1 – X (Twitter)
I support the Barth syndrome advocates going to DC next week to call for a fair, equitable @US_FDA review of the only investigational medicine for this life-threatening #RareDisease that [my son] has. We need action now! #RareDiseaseDay #NotTooRareToCare https://nottooraretocare.org/
Post 2 – Facebook/Instagram/LinkedIn
This week is #RareDiseaseWeek, and I’m proud to amplify the voices of the small but mighty Barth syndrome community, an ultra-rare disease that affects ~150 Americans. In just two months, we garnered nearly 20,000 signatures on a petition advocating for a fair, equitable, and appropriate [tag FDA] review of the only investigational medicine for Barth syndrome. Now we are asking Congress to hold FDA accountable to do their job and review the data! #RareDiseaseDay #NotTooRareToCare
https://vimeo.com/914024396?share=copy
Join us by writing your own letter to FDA or your Congressional representatives. Info here: https://nottooraretocare.org/
Post 2 – X (Twitter)
The @BarthSyndrome Foundation delivered a petition w/ nearly 20,000 signatures to @US_FDA advocating for a fair & equitable review of the only investigational medicine for Barth syndrome. Now we’re asking Congress to hold FDA accountable! #RareDiseaseDay #NotTooRareToCare
https://vimeo.com/914024396?share=copy
Post 3 – Facebook/Instagram/LinkedIn
Today is #RareDiseaseDay and I’m proud to advocate for everyone facing Barth syndrome [including my son, NAME]. There are no approved treatments for this life-threatening, progressive, ultra-rare heart disease – and [tag FDA] has so far refused to even look at the data for a promising investigational treatment. We need our elected officials to hold the FDA accountable by requiring them to exercise fair, equitable, and appropriate reviews of potential therapies for ultra-rare conditions like Barth syndrome. #NotTooRareToCare
Join our cause: https://nottooraretocare.org/
Post 3 – X (Twitter)
Today is #RareDiseaseDay & I’m proud to advocate for Barth syndrome. There are no approved treatments for this life-threatening #RareDisease, & @US_FDA has refused to review the data for a promising investigational treatment. #NotTooRareToCare https://nottooraretocare.org/
Post 4 – Facebook/Instagram/LinkedIn
[Tag The Hill]:
Last week, many #RareDisease families convened in Washington DC to advocate for [tag FDA] to listen to patients and caregivers, and to exercise fair, appropriate reviews of promising rare disease therapies with an understanding of the urgent need for treatments and unique challenges faced by our communities. The Barth syndrome community is one of several ultra-rare disease communities facing similar regulatory odysseys. To find out more, read the story of one of our Barth syndrome families in [tag The Hill]:
https://thehill.com/opinion/healthcare/4437637-rare-diseases-need-treatment-too/
#RareDiseaseDay #NotTooRareToCare
Post 4 – X (Twitter)
I urge @US_FDA to listen to patients/caregivers & exercise fair, appropriate reviews of promising #RareDisease therapies. Barth syndrome is one of many rare communities facing regulatory odysseys. Learn more in @TheHill:
https://thehill.com/opinion/healthcare/4437637-rare-diseases-need-treatment-too/
#RareDiseaseDay #NotTooRareToCare