Beacon for Rare Diseases (@RareBeacon)

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Beacon for Rare Diseases@RareBeacon · Jul 8

Photos OUT NOW! 📸 Want to reminisce about the #RareShowcase25 or weren't able to attend on the day? View the fantastic lightning talks that happened on the night and check out our full photo gallery here - smile you're on camera! 😄 resourceshub.rarebeacon.org/courses/the-ca…

RareBeacon's tweet image. Photos OUT NOW! 📸

Want to reminisce about the #RareShowcase25 or weren't able to attend on the day?

View the fantastic lightning talks that happened on the night and check out our full photo gallery here - smile you're on camera! 😄

resourceshub.rarebeacon.org/courses/the-ca…

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Beacon for Rare Diseases@RareBeacon · Jul 26

Join Beacon as a Trustee! Could you be who we're looking for? 👋 📝 Find out more about the role: ow.ly/UrKS50WrIAL How to apply: Send your CV and a short cover letter outlining to [email protected]. Deadline for applications = 4th August 2025 📅

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Beacon for Rare Diseases@RareBeacon · Jul 25

Whether you’re a patient, caregiver, researcher, industry professional, or healthcare provider, the Manchester Rare Disease Showcase is designed to spark ideas, amplify voices, and build bridges across our community. Get your early bird tickets! 👇 ow.ly/AxYt50WrLcZ

RareBeacon's tweet image. Whether you’re a patient, caregiver, researcher, industry professional, or healthcare provider, the Manchester Rare Disease Showcase is designed to spark ideas, amplify voices, and build bridges across our community.

Get your early bird tickets! 👇

ow.ly/AxYt50WrLcZ

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Beacon for Rare Diseases@RareBeacon · Jul 24

MSD World Day is next week (30 July)! This will be @CureMsd's 4th annual global awareness day Blue💙 is their signature colour (colour for leukodystrophy) so wear blue 💙on 30th July w/ us to show your support + follow @CureMsd to learn more about MSD curemsd.org/msd-world-day/

RareBeacon's tweet image. MSD World Day is next week (30 July)!

This will be @CureMsd's 4th annual global awareness day

Blue💙 is their signature colour (colour for leukodystrophy) so wear blue 💙on 30th July w/ us to show your support + follow @CureMsd to learn more about MSD

curemsd.org/msd-world-day/

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Beacon for Rare Diseases@RareBeacon · Jul 22

MSD World Day is next week (30 July)! This will be @CureMsd's 4th annual global awareness day Blue💙 is their signature colour (colour for leukodystrophy) so wear blue 💙on 30th July w/ us to show your support + follow @CureMsd to learn more about MSD curemsd.org/msd-world-day/

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Beacon for Rare Diseases@RareBeacon · Jul 21

We're looking for at least two new Trustees with lived experience of rare conditions or skills in finance or fundraising to help shape our future! 📝 Find out more about the role: ow.ly/UrKS50WrIAL Send your CV and a short cover letter to [email protected].

RareBeacon's tweet image. We're looking for at least two new Trustees with lived experience of rare conditions or skills in finance or fundraising to help shape our future!

📝 Find out more about the role: ow.ly/UrKS50WrIAL

Send your CV and a short cover letter to recruitment@rarebeacon.org.

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Beacon for Rare Diseases@RareBeacon · Jul 20

Join our upcoming webinar exploring the latest @CuresWReach funding opportunity – hosted in partnership with @REMEDi4ALL and Cures Within Reach! 📅 31st July | 3:30pm - 4:30pm Register here: 👇 ow.ly/ZzhO50WrHm8

RareBeacon's tweet image. Join our upcoming webinar exploring the latest @CuresWReach funding opportunity – hosted in partnership with @REMEDi4ALL and Cures Within Reach!

📅 31st July | 3:30pm - 4:30pm

Register here: 👇

ow.ly/ZzhO50WrHm8

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Beacon for Rare Diseases@RareBeacon · Jul 17

📢 Help shape the future of rare disease research regulation in the UK! Take @RDRUKHub & @LifeArc1's survey to help them better understand the experiences/needs of the rare disease research community when navigating the UK regulatory pathways/frameworks app.onlinesurveys.jisc.ac.uk/s/newcastle/re…

RareBeacon's tweet image. 📢 Help shape the future of rare disease research regulation in the UK!

Take @RDRUKHub &amp; @LifeArc1's survey to help them better understand the experiences/needs of the rare disease research community when navigating the UK regulatory pathways/frameworks

app.onlinesurveys.jisc.ac.uk/s/newcastle/re…

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Beacon for Rare Diseases@RareBeacon · Jul 16

Work w/ patients/families affected by TK2d? @4Lilyfoundation + @weareMSUK want to hear from individuals/families affected by this ultra-rare #MitochondrialDisease to support a submission to @NICEComms about access to a potential #Treatment Take survey! freeonlinesurveys.com/s/BP8zdKCm

RareBeacon's tweet image. Work w/ patients/families affected by TK2d?

@4Lilyfoundation + @weareMSUK want to hear from individuals/families affected by this ultra-rare #MitochondrialDisease to support a submission to @NICEComms about access to a potential #Treatment

Take survey!

freeonlinesurveys.com/s/BP8zdKCm

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Beacon for Rare Diseases@RareBeacon · Jul 15

📢 Help shape the future of rare disease research regulation in the UK! Take @RDRUKHub & @LifeArc1's survey to help them better understand the experiences/needs of the rare disease research community when navigating the UK regulatory pathways/frameworks app.onlinesurveys.jisc.ac.uk/s/newcastle/re…

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Beacon for Rare Diseases@RareBeacon · Jul 14

Work w/ patients/families affected by TK2d? @4Lilyfoundation + @weareMSUK want to hear from individuals/families affected by this ultra-rare #MitochondrialDisease to support a submission to @NICEComms about access to a potential #Treatment Take survey! freeonlinesurveys.com/s/BP8zdKCm

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Beacon for Rare Diseases@RareBeacon · Jul 11

📢 Help shape the future of rare disease research regulation in the UK! Take @RDRUKHub & @LifeArc1's survey to help them better understand the experiences/needs of the rare disease research community when navigating the UK regulatory pathways/frameworks app.onlinesurveys.jisc.ac.uk/s/newcastle/re…

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Beacon for Rare Diseases@RareBeacon · Jul 11

New course on the Resources Hub! 💻 How to build relationships and network This video guide will walk you through practical strategies to connect with confidence, build lasting relationships, and grow your community’s reach and impact. Watch here: 👇 ow.ly/7GtH50WjCAe

RareBeacon's tweet image. New course on the Resources Hub!

💻 How to build relationships and network

This video guide will walk you through practical strategies to connect with confidence, build lasting relationships, and grow your community’s reach and impact.

Watch here: 👇

ow.ly/7GtH50WjCAe

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Beacon for Rare Diseases@RareBeacon · Jul 11

Work w/ patients/families affected by TK2d? @4Lilyfoundation + @weareMSUK want to hear from individuals/families affected by this ultra-rare #mitochondrialdisease to support a submission to @NICEComms about access to a potential #treatment Take survey! freeonlinesurveys.com/s/BP8zdKCm

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Beacon for Rare Diseases@RareBeacon · Jul 11

We love seeing Kinsley and mom Sarah! 😍 Sarah was on our Patient Group Mentoring Programme and has moved mountains with her mentor @AaronBlocker_ to further TUBB4A awareness Keep smiling Kinsley ☺️ We're all rooting for you!

nn-Lorem Foundation@n_lorem · Jul 10

This is Kinsley, a 4-year-old with TUBB4A-related leukodystrophy. Her family flew in from Dallas to visit our lab yesterday and said she’s always talking about “the medicine in my back so I can walk and run... and then run some more.” A powerful reminder: Hope matters. Always.

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EOS Network Eosinophilic Diseases Charity@CharityEos · Jul 11

💜Why does this #eosinophil look like a heart? 💜Prof. @RossanaMelo5, a cell biologist @UFJF_, explains what an electron micrograph is. 👉"Love in Focus" blends #science and art to spotlight #eosinophilic diseases at #IES2025 @EosinophilSoc. @CincyChildrens @RothenbergLab

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Beacon for Rare Diseases@RareBeacon · Jul 10

The #UK could lead the way in rare disease innovation, boost the country’s R&D ecosystem, and change the future for millions of people living with rare diseases. We support this @LifeArc1 and @GeneticAll_UK report on how we #ChangeTheRareFuture: t.ly/8lqIH

RareBeacon's tweet image. The #UK could lead the way in rare disease innovation, boost the country’s R&amp;D ecosystem, and change the future for millions of people living with rare diseases.

We support this @LifeArc1 and @GeneticAll_UK report on how we #ChangeTheRareFuture: t.ly/8lqIH

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Rare Disease Research UK@RDRUKHub · Jun 23

📢 Are you involved in rare disease research in the UK? We want to hear from you! 🔎 Share your experiences with regulatory and market access pathways for rare disease — the good, the bad, and the changes that you would like to see! 📝Take the survey tinyurl.com/r-dsurvey

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Ataxia and Me CIO 1184030@Ataxia_and_Me · Jul 4

@OHRareDisease Please share 1 in 17 people in the UK will be affected by a #RareDisease but the realities of living with one often go untold. Learn about my story and why my Passport is significant to me in my #RD journey Visit the #IAmNumber17 website

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LifeArc@lifearc1 · Jul 10

On Monday, our new report with @GeneticAll_UK launched. Here, our Chair of Rare Disease, Amit Nathwani, talks about why it's so important that we, as a nation, work together to #ChangeTheRareFuture. Read the report: lifearc.org/rd-report/

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Genetic Alliance UK@GeneticAll_UK · Jul 9

Launching our new report 'Time to Decide - a follow-up to Fixing the Present, Building the Future'. Our report explores newborn screening in 14 countries and sets out 5 key recommendations to help expand screening in the UK. Read more here: geneticalliance.org.uk/news/time-to-d…

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