From 2026, Beacon will no longer be using X. Our account will stay visible so people can find us, but we will not be posting or monitoring messages.
You can follow us on Instagram, Facebook and LinkedIn, and keep up to date via our website and newsletter.
rarebeacon.org
From 2026, Beacon will no longer be using X. Our account will stay visible so people can find us, but we will not be posting or monitoring messages.
You can follow us on Instagram, Facebook and LinkedIn, and keep up to date via our website and newsletter.
rarebeacon.org
We also work with researchers, clinicians, policymakers and life science professionals to build a collaborative rare disease ecosystem, where patient voices are central to decisions that shape research, care and policy. Visit our website to explore our programmes.
If you are affected by a rare condition and in need of support, visit our resources page for signposting, guidance and trusted organisations who may be able to help. You can also explore our training, toolkits and community events.
rarebeacon.org/about-us/who-โฆ
Monday!
๐ฅ๐ฎ๐ฟ๐ฒ๐น๐ ๐๐ฒ๐ฎ๐ฟ๐ฑ, ๐ฆ3, ๐๐ฝ๐ถ๐๐ผ๐ฑ๐ฒ 3: ๐๐ป๐ฑ๐๐๐๐ฟ๐ ๐ฐ๐ผ๐น๐น๐ฎ๐ฏ๐ผ๐ฟ๐ฎ๐๐ถ๐ผ๐ป๐
Join us as we delve into the world of industry & patient organisation collaborations ๐ค
Thank you to our speakers: @ABPI_UK @weareMSUK Astellas Pharma
rarebeacon.org/rarely-heard/โฆ
Beacon is proud to welcome five new trustees to our board in our 13th year of operation!
Meet the new faces joining the Beacon team whoโll be helping us to ensure that no one faces their rare journey alone.
Learn more about our new trustees here!
rarebeacon.org/news/beacon-fโฆ
๐จ Today's USโUK trade agreement "...is an important step towards ensuring patients can access the innovative medicines needed to improve wider NHS health outcomes.โ
Read the full response from our Chief Executive @TorbettRabpi.org.uk/media/news/2025/โฆ@DHSCgovuk@SciTechgovuk
Our latest report on the state of UK industry clinical trials is out.
โ The number of UK clinical trials is up
โPatient participation is down - and is at its lowest since 2017/18
๐จAction is underway, we recommend further measures to help
Read more: abpi.org.uk/publications/uk-โฆ
Rare Diseases International released the Framework for Improving Quality of Life for Persons Living with a Rare Disease (QoL Framework) shaped by the insights & lived experiences of RDI members/global rare community ๐
Download the Framework and share!
zenodo.org/records/17279486
ALT A woman helps her toddler walk on a log in a park, showcasing child support and family bonding.
Set up ready at the @rarebeacon Rare Diseases Manchester Showcase.
Ready to build awareness of #Fahrs and #PFBC along with making new professional relationships.
You left us feeling inspired with your lightning talk, Charlotte! ๐คฉ
Thank YOU for coming to #RareShowcase25 yesterday and for the very kind words ๐งก
Absolutely fantastic day at @RareBeacon Rare Disease Showcase in Manchester (Bridgewater Hall) ๐๐ป Brilliant opportunity to be able to be able to present/talk and listen to a variety of talks. Definitely feeling inspired ๐#RareShowcase25#proud#grateful#raredisease
โจNicoleโs story shows that you can change the narrative and take control, no matter the challenges you face.
Born with Primary LymphedemaโWILD Syndrome, sheโs raising awareness and empowering others through fashion!
๐ฃShare your story: go.rarediseaseday.org/share#RareDiseaseDay
ALT Portrait of Nicole from Puerto Rico smiling brightly in front of a graffiti wall. She wears a denim jacket and an orange compression glove. Text reads: โNicoleโs Story! Primary Lymphedema โ WILD Syndrome. Puerto Rico. Share Yours!โ
ALT โI was born with a swollen arm. Thatโs the reason why you see me wearing the colourful gloves in photos...and wear 7 pieces of compression garments EVERY day. I am passionate of changing the narrative associated with the condition, because after all, I am not alone and my challenges are not that unusual. After thousands of posts, millions of views, a couple dozen of podcast episodes, I can confidently say we have crated a community that is stronger than ever...โ
Announced at #RareShowcase25!
๐ง๐ต๐ฒ ๐จ๐ ๐ฅ๐ฎ๐ฟ๐ฒ ๐๐ถ๐๐ฒ๐ฎ๐๐ฒ๐ ๐๐ฟ๐ฎ๐บ๐ฒ๐๐ผ๐ฟ๐ธ ๐๐ถ๐น๐น ๐ฏ๐ฒ ๐ฒ๐ ๐๐ฒ๐ป๐ฑ๐ฒ๐ฑ ๐ฏ๐ ๐ฎ ๐๐ฒ๐ฎ๐ฟ
Minster Dalton from the @DHSCgovuk, who is responsible for rare diseases, made the exciting announcement
Learn more!
rarebeacon.org/news/the-uk-rโฆ
And the Beacon Bunch is rolling out! ๐โ๏ธ
We're headed up to Manchester to get everything ready for #RareShowcase25 tomorrow
We can't wait to welcome over 150 rare disease advocates in less than 24 hours
SEE YOU SOON! ๐คฉ
Thank you to our Gold Sponsor @AdelphiValues for supporting the #RareShowcase25!
Without their support, the showcase wouldn't be possible
Members from Adelphi Real World will join us at the showcase, so view their fun fact & learn about their work: ow.ly/6ns750XtYJL
Thank you to our Gold Sponsor @AdelphiValues for supporting the #RareShowcase25!
Without their support, the showcase wouldn't be possible
Members from Adelphi Values PROVEโข will join us at the showcase, so view their fun fact & learn about their work: ow.ly/6ns750XtYJL
The 100-day countdown to #RareDiseaseDay begins!
Meet Mak, Linges, Micah, Ayรงa & Burak, our heroes showing what life is like for the 300M people living with a rare disease.
Full video ๐ฅ youtu.be/7J1oTfoIOGw
Letโs bring about equity in more ways than even we can imagine!
Catch @StargardtsC TONIGHT on BBC One at 7 pm GMT!
They'll be featured on @BBCTheOneShow - One Big Thank You for going the extra mile to help others in their community
We couldn't be happier to see them being thanked and featured on a national stage!
bbc.co.uk/programmes/articleโฆ