rareLife solutions announces Founder & CEO Dan Donovan will present at UConn Rare Disease Day on April 7, 2026, at the UConn School of Pharmacy.
His session, “The Rare Disease Landscape,” explores key challenges and opportunities in the field.
#UConn #RareDiseaseDay #NORD #rareLifeSolutions

Last month, the RareKids-CAN community came together to celebrate Rare Disease Day 2026 with events across the country

Read more about the impact and activities here:
www.rarekidscan.com/news/rare-di...

#RareDiseaseDay #PediatricRareDisease

It’s been a month since #RareDiseaseDay, and while the hashtags might have slowed down, our community never does! Huge thank you to Jenny, Sophie and their entire community for raising awareness of PSC and vital funds for the PSC community.
#PSCSupport #LetsBeatPSC #RareDiseaseAwareness

Motor Neurone Disease (MND / ALS) — Rare Disease Day - Despite Pain This post is about my cousin who has Motor Neurone Disease (MND / ALS), a rare, progressive neurological condition.. It's also very cruel.

For #RareDiseaseDay, this piece from Despite Pain highlights motor neurone disease (MND/ALS) with honesty and clarity.

Stories like this matter. They expand awareness beyond what most people see and remind us how much strength exists inside the #raredisease community.

Read it now:

🎥 The recording of our #RareDiseaseDay 2026 #Webinar on #PlateletDisorders with @eahad.bsky.social is available on our @EHCTVChannel — patient stories & clinical insights in one session. ▶️ 🔔 Watch & subscribe: youtu.be/ycGuueLXBP0?...

Portait of a boy with overlapping text: have something to say? let us know, Rare Disease Day 2026 survey

📝Have you completed our #Survey yet?

Your opinion helps us to gather insights that shape the future of #RareDiseaseDay and allows us to continue to support the #RareDisease community.

Help us make a difference: go.eurordis.org/RDDsurvey

A collage of six photos from a Rare Disease Day event at Moorfields Eye Hospital showing researchers from the UCL Institute of Ophthalmology engaging with visitors. Scientists are posing in groups wearing “Talk to me, I’m a Scientist” badges in front of an NIHR Moorfields Biomedical Research Centre roll banner. In one image, a scientist is demonstrating strawberry DNA extraction in a large test tube and is holding up the red DNA extract to the camera.

For #RareDiseaseDay our BRC and @moorfieldsfriends.bsky.social hosted @ucleye.bsky.social researchers for a public engagement event.

Visitors learnt about rare eye disease research through stem cell science, new therapies and hands-on DNA demonstrations.

🔗: moorfieldsbrc.nihr.ac.uk/nihr-moorfie...

The Advocate: March 2026 ASGCT joins bipartisan sign-on letters supporting the reauthorization of the C.W. Bill Young Transplant Program and robust FY27 funding for NIH ($51.3B)...

For #RareDiseaseDay, ASGCT submitted testimony to the Senate Aging Committee urging regulatory approaches that align with modern science, including flexibility for single-arm trials, external controls & platform-based #CGT development. Read more: https://bit.ly/4cWioWT

To mark #RareDiseaseDay 2026, the short film of our global #RaisingYouthVoices2026 event was released! 🎥

Learn more about the issues that are driving young members of our community to fight for a more equitable future.⬇️

🧬 On #RareDiseaseDay, we were happy to launch a study on Neurofibromatosis Type 1, in partnership with NF Patient United.

NF1 is a rare genetic disease with no cure affecting 250,000+ people in Europe, yet the barriers patients face are still poorly mapped.

🔍 www.braincouncil.eu/projects/ret...

#HealthcarePolicy #EvidenceInPractice #CareCoordination #PatientVoice #HealthResearch #EquitableCare #RareDiseaseDay #PatientExperience #PersonCentredCare #HealthEquity #RareDiseases

For #RareDiseaseDay (28 Feb), our Senior Research Associate Molly Blackwell explored why understanding experiences of care is essential to improving equity, highlighting findings from our survey with the Marfan Trust.

Read more: bit.ly/RareDiseasesBlog

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Top 10 blog posts in February 2026: #8. Celebrating Rare Disease Day - February 28 News about MSI Press authors; Excerpts from MSI Press authors' books; Carl's Cancer Compendium information; tips for authors

Top 10 blog posts in February 2026: Celebrating #RareDiseaseDay February 28

msipressblog.blogspot.com/2026/03/top-...

It's okay to play around with A.i. gif...as long as it's pics of you, right?
🤟😁💜👍
#snowbunny
#zebrastripes
#zebrapower
#zebrastrong
#rarediseaseday
#february28th
#mucklewellssyndrome
#latedeaf
#fall7getup8
#keepgoing

Rare Disease Day Survey! Have your say! Give us YOUR feedback!

🫵 We want to hear from you!

By completing our #Survey, you’re helping us gather the insights allows us to learn, refine, and build a #RareDiseaseDay campaign that truly supports the #RareDisease community.

Take 10 minutes. Make a difference: https://go.rarediseaseday.org/Survey2026

#rarediseases are not always visible, so #colourUp4RARE ! More #research is needed to develop new diagnostic and treatment options and to ensure reliable care. The BLACKSWAN Foundation, with #ProRaris, was in Bern to show our colours. #RAREvolution #RareDiseaseDay #ShareYourColours

Young & Rare 2026 was a great success.

Young patients, families and experts from different countries came together to discuss the realities of children and young adults living with #MPN.

📺 YouTube: GlobalMPNScientificFoundation

🌐 https://www.gmpnsf.org

#MPNsm #RareDiseaseDay

A woman stands in front of a poster and explains it to a man.

Three people on stage. One is speaking behind a podium.

Several tables with sponsor tablecloths on them.

Two women stand in front of a poster.

Posters, presenters and sponsors! A full #RareDiseaseDay #UMNResearch

The image shows a sponsorship board for Rare Disease Day 2026. It lists sponsors by category: Gold Level includes Stoke Therapeutics and UCB; Silver Level includes Acadia, Alnylam, Biogen, Ipsen Biopharmaceuticals, Orphalan, Sanofi, and SpringWorks Therapeutics; Bronze Level includes Biomarin, Fairview Pharmacy Services, and Jazz Pharmaceuticals.

Thanks #RareDiseaseDay sponsors: Acadia, Alnylam, Biogen, Chiesi, Ipsen Biopharmaceuticals, Orphalan, SafetyCall, Sanofi, SpringWorks Therapeutics, BioMarin, Fairview Pharmacy Services, Gillette Children's, Ionis, JazzPharma, Olink Proteomics, Ultragenyx, & Upsher Smith Laboratories.

@umnmedschool

People eating breakfast at round tables.

Patient Advocacy Breakfast is underway. #UMNResearch #RareDiseaseDay

State of Minnesota Proclamation for Rare Disease Awareness Day

Today is the day! #RareDiseaseDay #UMNResearch

CTGCT at the 12th National Rare Disease Day Conference - CTGCT On Friday, February 27, 2026, part of our team joined experts, decision-makers, and patient advocates at the 12th National Rare Disease Day Conference held at the Congress Center Brdo pri Kranju.The e...

The #CTGCT team joined the 12th National Rare Disease Day Conference.
Highlights:
✅ #Urbagen: 1st Slovenian rare disease drug milestone
✅ @genehproject.bsky.social : Proud partners in patient-centric research
✅ Bridging the gap from lab to bedside
ctgct.si/en/objave/12...
#RareDiseaseDay #Slovenia

How the JARDIN Joint Action Strengthens ERNs for Rare Diseases Learn how the JARDIN Joint Action supports the integration of European Reference Networks (ERNs) into healthcare systems, improving rare disease diagnosis, patient pathways, and cross-border collabora...

✍ On #RareDiseaseDay, the European Health and Digital Executive Agency spoke with representatives of #JARDIN.

🗣️ They explained how the JA is strengthening the work of the #ERNs by supporting their better integration into healthcare systems in Europe.

Read it here 🔗👇
jardin-ern.eu/new/jardin-j...

#RareDiseaseDay 2026 may be over but raising awareness never stops 💜

Every day is an opportunity to highlight rare conditions like Addison's disease and adrenal insufficiency and keep the conversation going.

Catch up on our post below to learn more ⬇️

Havering Campaigner Marks Rare Disease Day-A Moving Tribute to Families. Rare families have to be nothing short of incredible 28 February marks this year’s Rare Disease Day. A disease is classified as rare when fewer than 1 in 2,000 people are affected. 70% of rar…

#RareDiseaseDay
thehaveringdaily.co.uk/2026/03/04/h...

Rare disease innovation needs mission‑driven science. Our CEO explored this on the latest episode of the @newstatesman1913.bsky.social podcast, released for #RareDiseaseDay.

Listen on Spotify: t.ly/RteOX
Listen on Apple Podcasts: t.ly/O_5DG

The Promise and Challenges of Genomics for Patients and Families Affected by Rare Conditions Availability and implementation of genetic testing on a national and global level have advanced exponentially over the last few decades. While having a diagnosis of a rare genetic condition can have ...

#RareDiseaseDay recently passed, but at Annals of Human Genetics, we’re proud of the research published. The work of our authors helps to shorten the diagnostic odyssey and advance new treatments.

Explore a recent review that reflects on how genomics has transformed rare disease diagnosis and care.

Join us today for ESE Talks... Rare Diseases webinar on Sarcopenia in Rare Endocrine Disorders, in special recognition of #RareDiseaseDay.

📅Tuesday 3 March, 17:00-18:30 CET

It's not too late to register! 👇
ow.ly/BaMt50Y0mJu
#RareDiseases

#RareDiseaseDay

TalkAboutIt.org and click on PODCASTS #RareDiseaseDay

CHALLENGE EXTENDED! We need 15 monthly donors by March 6th to unlock $15,000! give.thelamfoundation.org/give/761254/
#RareDiseaseDay #curelam #LAMFoundation #DonateNow