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🚫 Avoid These Common Phrases When Supporting a Friend with a Rare Disease 🚫⁠ ⁠ When someone is newly diagnosed, the words we choose matter. While we always mean well, certain phrases can feel dismis
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April is MOGAD Awareness Month! Learn about a few opportunities for you to get involved, help spread awareness, and advance research in this rare disease!⁠ ⁠ Also, be on the lookout for more MOGAD res
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At age 23, Chris Anselmo, rare disease author of 'Hello Adversity,' was told by a neurologist that, within a decade, he’d lose the ability to walk.⁠ ⁠ For several months, rather than face reality, Chr
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For too long, females with X-linked conditions like Danon disease have been told they are β€œjust carriers.” But many experience real symptoms and real challenges. They are often overlooked in researc
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February 28 is Rare Disease Day πŸ’™ Today we honor the millions of individuals and families living with rare diseases by sharing their stories, strength, and resilience. Download our free e-book, We
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Rare Disease Awareness Month may be coming to and end. But rare diseases are not. Families are still waiting for answers. Patients are still navigating uncertainty. Research is still needed. And we
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If you’re living with IgA Nephropathy, you’ve probably wondered: β€œIs there a specific kidney diet I should be following?” The answer is not as simple as a list of foods to avoid. There is no one siz
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In the article What Caregiving for a Rare Disease Really Looks Like, Dr. Paige Ryan, PT, DPT shares what caregivers actually do, from clinical coordination and equipment management to constant decisi
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Thank you to the Danon Foundation for your work for those living with or affected by Danon Disease @danonfoundation. Read more about their work advocating for and empowering the Danon Community on the
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Fatigue is a common interruption of your life when your platelets drop due to ITP. How can you describe how it affects your life? Take the Fatigue Survey and see how much it does, and share it with yo
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Thinking about a clinical trial for IgA nephropathy (IgAN)? In this video, @kidney_dietitian_australia shares why some people living with IgAN choose to join clinical trials alongside their regular
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"I didn't want to get out of bed." @chronically.carrielee shares how she learned to maneuver her life around her diagnosis of ITP. Know Rare can help you find and access research and resources for IT
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About @knowrare

Know Rare | Rare Disease Advocacy is a Instagram nano influencer in the Medical & health category. With 7.4K followers and 12 posts, knowrare's account shows a follower-to-following ratio of 2.1:1. View all content anonymously on Pictame - no login required.

knowrare's engagement rate sits at 0.81%. For accounts with 1K-10K followers, the average is around 5%, so there's some room to grow β€” though every community is unique.

Out of the last 12 posts, 17% are videos and 83% are photos. Notably, photos tend to get 7.0x more engagement than videos. Content shows up about every 34 days. Captions lean detailed, averaging 563 characters.

0.81% engagement rate β€” room to grow compared to average for 1K-10K follower accounts.
17% videos, 83% photos. Photos get 7.0x more engagement here.
Posts about every 34 days.
2.1:1 follower-to-following ratio.

FAQs About @knowrare

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knowrare
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@knowrare

Know Rare | Rare Disease Advocacy

PublicMedical & health
Posts
12
Followers
7.4K
Top Hashtags
#KnowRare#RareDisease#RareDiseaseAwareness#raredisease#rarediseaseawareness#RareCommunity#itp#RAREDISEASERESEARCH

Explore the most impactful hashtags used in recent posts. These tags highlight the core interests and trending topics that define this profile's digital influence and content strategy.

Following
3.6K
Avg. Likes
59
Avg. Comments
1
Engagement
0.81%

We are all RARE πŸ’™πŸ’› We are a rare disease community made by people just like you. Get support & insights from real peop...

linktr.ee/knowrare