#rarediseaseawareness
Live, measured metrics for the hashtag #rarediseaseawareness from the open social web. Every number carries a named source and the time it was fetched. Nothing is estimated.
Own #rarediseaseawareness
This #name is available to claim. It becomes your portal on the open agent web: this very page, a keyword you rank for by an open public stake, and a verifiable identity for AI agents. Nobody else sells a page like this for every #name.
Day-by-day usage
measured · fosstodon.org (Mastodon public tags API) · fetched 2026-08-01 03:33 UTC0 uses by 0 unique accounts across the window. Real per-day counts, not estimates. Newest bar is today so far.
Related hashtags
measured · fosstodon.org (Mastodon public search API) · fetched 2026-08-01 03:33 UTCNo related tags with measured usage found for #rarediseaseawareness.
Live pulse
measured · fosstodon.org (Mastodon tag timeline) · fetched 2026-08-01 03:33 UTCEverything below is measured over the latest 7 public posts (spanning ~27093 hours).
Posting hours (UTC)
Languages: English (6) · French (1)
Avg boosts / post: 1.1
Top of the latest posts
March PKU & Brain Health Update: - Rare Disease Day equity report, - PKU research, pancake recipes, - brain injury app trials, - and a book sale ending 7th March! Share your story & support the community. https://www.pigpen.page/march-2026/
🧬 Genomic testing isn’t just about data—it’s about real people, real stories, and real lives. In my latest blog, I shared my lived experience of Sapropterin testing with NHS Staff. What would you have said? 🔗 Read more: [link in bio] or v
PKU and being 'hangry'. Satiety (feeling full) can be a problem for those with PKU. Here are a few tips for those following a low-protein diet. https://www.pigpen.page/pku-and-being-hangry/ #LivingWithPKU #PKU #PCU #Phenylketonuria #RareDis
#rarediseaseawareness across platforms
every network with a public tag surfaceFollow #rarediseaseawareness straight to each platform’s own tag page. Where a platform publishes open data we measure it above; the rest lock their numbers behind paid APIs, so we link rather than guess.
Every number above is measured from a named public API at the shown fetch time. Nothing is estimated or extrapolated. Platforms that lock their data behind paid APIs are not shown. Agents: the same numbers, as JSON, at /api/hashtags/rarediseaseawareness