LISTEN TO OUR PODCAST

THE LATEST FROM PATIENT WORTHY

FEATURED

UPCOMING EVENTS

SIGN UP FOR OUR NEWSLETTER

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
60 minutes ago

Cambridge Rare Disease NetworkWe’ll be joining the global chorus of voices to highlight that, although individually rare, having a rare or undiagnosed condition is actually very common, yet our community so often remains unseen and unsupported.

There are various ways you can get involved with Rare Disease Day throughout the month:

#LivingRARE - Join us for our in person event in Cambridge for Rare Disease Day camrarerarediseaseday2026.eventbrite.co.uk/

#LightUpForRare - Around the world at 7pm local time on 28th Feb people will be lighting up buildings, lighting or decorating their homes (or themselves!) to spread the word in a global chain of light!

#ShareYourColours - Share your own unique experiences.

Be #RareAware - If you don't want to share your own story, or don't have a direct connection to rare disease, you can still get involved by sharing facts and other people's stories by searching the #RareDiseaseDay hashtag, and help to spread the word about rare.

#ShowYourStripes - Join @medics4rarediseases and wear your stripes

Fun fact:
Why is Rare Disease Day the last day in February?
Because during a leap year the last day in February is the 29th - the rarest date in the calendar!
... See MoreSee Less

Cambridge Rare Disease Network

#datacollection Homocystinuria - HCU Network AmericaHave questions about RareX? We’ve got answers! 💬

Join our virtual open office hours this Thursday, February 4th, from 12–2 PM MST to connect with our Research Coordinator and learn how to navigate the Homocystinurias Data Collection Program.

Drop in anytime during the window—no pressure, just support. 💙

🔗https://bit.ly/RarexOfficeHours

#HCUHero #RareX #Podcast #Hope #International #Homocystinuria #newbornscreening #genetics #Classical #coblamindisorders #severeMTHFR #lowprotein #lowproteindiet #medicalformula #raredisease #research #advocacy #treatment #Connection
... See MoreSee Less

#datacollection  Homocystinuria - HCU Network America
Glioblastoma Research OrganizationImage attachmentImage attachment+5Image attachment
Load more