Beacon for Rare Diseases @RareBeacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure. rarebeacon.org Cambridge, England Joined March 2012-
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2 weeks to go! #ECRD2024! 📆15th & 16th May ECRD is the largest, patient-led, rare disease policy-shaping event, an opportunity to network and exchange insights with the rare disease community. ❗Get 15% off online attendance: ECRD24_MediaPx_OnL153 rare-diseases.eu
2 weeks to go until #ECRD2024! ⏰ ECRD is the largest, patient-led, rare disease policy-shaping event, an opportunity to network and exchange insights with the rare disease community. ❗Get 15% off online attendance: ECRD24_MediaPx_OnL153 rare-diseases.eu
High ammonia is a time-sensitive, medical emergency with the risk of death and serious neurological damage. Recognise the signs. Test earlier. Save Lives. Support the “Think Ammonia!” campaign from @weareMSUK which is aiming to improve outcomes for high ammonia! #ThinkAmmonia
Explore our new course on The Hub! 👉 Introduction to advanced therapies What will you learn? 💡 What advanced therapies are 💡 Funding advanced therapies 💡 Developing advanced therapies And more! Register now: ow.ly/i5bS50R6BXN
Want to grow your patient community? 🙌 Check out our webinar on The Resources Hub! Learn: 💻 How to use rare disease databases 📝 How to use online forums and membership lists 🔎 How to search for more opportunities, specific to your rare disease ow.ly/n7lz50RjG3w
Take part in a new survey for UK-based rare disease patient groups on gene therapy decision aids! 📝 Accounting for socioeconomic position in patient decision aids for gene therapy Find out more and get involved: 👇 ow.ly/QOAT50RnXYm @PulseInSync @imperialcollege
Have your say in @eurordis global survey initiative, Rare Barometer! 🗣️ The survey aims to make the voice of rare disease patients stronger. By contributing the results can be shared with patient organisations, policy makers and the wider public! 🙌 🔗 ow.ly/M2aM50RjCMA
📢 @REMEDi4ALL has launched first drug repurposing-specific funding database! 👉 The database provides drug repurposing funding calls that applicants can use to find where they can apply for funding. Find out more: ow.ly/iYg350RnVnU
1 day left! By nominating us for @benefactgroup 's Movement for Good Awards, Health and Wellbeing special draw, we have the chance to receive £5000 enabling us to continue our support in the rare disease space. ⏰ Open until 26th April. Support us: 👇 ow.ly/cHWa50Rm5wU
Have you registered for our brand new webinar series yet? 💻🧬 Our Decoding Diagnostics series will provide clarity and guidance to individuals and communities within the rare disease space. 👉 Register for Part one and Part two now! ow.ly/yMmL50RgUH9
Looking to level up your presence on Facebook? 🚀 Enrol in our course on The Hub! Expect to learn: 🤔 If Facebook is right for your patient group 📲 How to set up a Facebook page ⏰ When you should post on Facebook And more! Register for free here: ow.ly/Hxuj50R4fL1
Register now for the @MCDS_Therapy Final Conference! 👉 Join to ask your burning questions and see what the consortium has achieved throughout the international research collaboration. Register here: ow.ly/LW5g50RcZ0N
Secure your place at #ECRD2024! ECRD is the largest, patient-led, rare disease policy-shaping event, an opportunity to network and exchange insights with the rare disease community. ❗Get 15% off online attendance: ECRD24_MediaPx_OnL153 rare-diseases.eu
By nominating us for @benefactgroup 's Movement for Good Awards, Health and Wellbeing special draw, we have the chance to receive £5000, enabling us to continue our support within the rare disease space. ⏰ Open until 26th April. Support us here: 👇 ow.ly/cHWa50Rm5wU
Explore our new course on The Hub! 👉 Introduction to advanced therapies What will you learn? 💡 What advanced therapies are 💡 Funding advanced therapies 💡 Developing advanced therapies And more! Register now: ow.ly/i5bS50R6BXN
Register now for the @MCDS_Therapy Final Conference! 👉 Come along to ask your burning questions and see what the consortium has achieved throughout the international research collaboration. Register here: ow.ly/LW5g50RcZ0N
"Great Ormond Street Hospital (GOSH), supported by @lifearc1 has announced plans to revolutionise how children living with a rare disease can gain access to life-changing treatments." Read more here: 👇 ow.ly/q0Ih50Re5YH
If you are an early-stage patient group looking to recruit new trustees, plan to in the near future or are an established group looking to refresh their board, view tips for recruiting trustees to your board! With thanks to @GettingonBoard Watch now: 👇 ow.ly/tBrA50QpAmS
Well done to you all for taking on this challenge, good luck on Sunday! 🧡
Well done to you all for taking on this challenge, good luck on Sunday! 🧡
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
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32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Effie Parks @OnceUponAGene
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RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Cambridge Rare Diseas.. @camraredisease
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Taylor Kane @rarelikeher
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Medics4RareDiseases @M4RareDiseases
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Genomics Education @genomicsedu
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RDI @rarediseasesint
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Patient Worthy @PatientWorthy
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Global Genes @GlobalGenes
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NHS Genomic Medicine .. @NHSgms
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Genetic Alliance UK @GeneticAll_UK
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James Fasham @JamesFasham
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Unique @Unique_charity
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EJP RD - European Joi.. @EJPRareDiseases
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SWAN UK (syndromes wi.. @SWAN_UK
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Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
Genomics Education @genomicsedu
23K Followers 2K Following NHS England's Genomics Education Programme. Providing knowledge, skills and experience in #genomics #NHSgms #genomes100K #NHS #GenomicsConversation
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
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Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
NHS Genomic Medicine .. @NHSgms
7K Followers 816 Following Information for and from the NHS Genomic Medicine Service 🧬 #Genomics. https://t.co/MizyyMpX02…
Genetic Alliance UK @GeneticAll_UK
16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
Professor Dame Sue Hi.. @CSOSue
11K Followers 8K Following I am the Chief Scientific Officer for England and the Senior Responsible Officer for Genomics in the NHS
James Fasham @JamesFasham
3K Followers 3K Following 🧬👨⚕️Genetics doctor & PhD 💻 💬 Social media: @ESHGsociety @JMG_BMJ and @BritSocGenMed. 🤖 @DiseaseGenes bot creator (#Genetics #Genomics #RareDisease)
Unique @Unique_charity
8K Followers 2K Following Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner. https://t.co/GkIBlYg5c5
Luke Rosen @lukebrosen
2K Followers 432 Following Dad of 2 amazing kids. Founder of https://t.co/M8dxuYqmgL. Works with families affected by rare neurological diseases and cancer. Baseball and hockey. Firefighter.
EJP RD - European Joi.. @EJPRareDiseases
4K Followers 2K Following #EJPRD - European Joint Programme on Rare Diseases | RTs shares likes ≠ endorsement
The Wren Project @wren_project
426 Followers 534 Following A UK charity supporting individuals with the emotional & psychosocial impact of #autoimmunedisease. We offer free, 1-1, active listening support.
me&dee @MeandDeeUK
2K Followers 3K Following Official Twitter account for me&dee Charity - Creating special memories when time is precious. #smallbiz100
Foundation for ARID1B.. @FAR_ARID1B
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CJD Support Network U.. @supportcjd
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484 Followers 192 Following Professor of Rheumatology, ERN ReCONNET Coordinator, Head of the Rheumatology Unit of Pisa, University of Pisa #SLE #connectivetissuediseases #rarediseases
APS Foundation of Ame.. @APSFA
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Ricardo Bedón🇪�.. @ricardo_bedon
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Caroline @robyndarcey5
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577 Followers 783 Following Happy mom of 4. Pediatric immunologist and rheumatologist. Researcher in inborn errors of immunity/autoinflammatory diseases/Rare Disease. @UDD_FM #PIDD #JMF
Martha Ella 👩🏼�.. @martianmushroom
622 Followers 381 Following ordinary lady in a wierd world EDS3 person and coma survivor-a wheelchair user that doesnt moan about it.We sadly lost Polly 2023 + Maisie is gorgeous as ever
Diana Kwast-Hoekstra @DianaKwast
426 Followers 637 Following Verplegingswetenschapper/Transitiemanager/docent IRDiRC TSC-lid/Pt-vertegenwoordiger Eurordis/Endo-ERN Vz. St. (On)beperkt Vooruit! Paardencoaching/instructie.
Carmen Martín-Gómez @cArmen_MaRgO
594 Followers 901 Following PhD | Psychologist | Postdoctoral Researcher at @AETSA_ @FProgresoysalud "Raíces y alas. Pero que las alas arraiguen y las raíces vuelen" (JRJ). 🍃
Ian Hill @IanHill7
168 Followers 492 Following Dad to 3 amazing kids. Occasional blogger on life as parent of a child with a rare chromosome disorder #idic15
Joanne Osmond @Joanneosmond
1K Followers 3K Following Passionate about Cystic Fibrosis, Homelessness, ASD inclusion, our Planet. Own Views.
Mary S @MaryS58459511
476 Followers 340 Following Retired counsellor, now Thyroid warrior and fitness enthusiast
Caroline Jane Ayling @cjayling
1K Followers 954 Following Marketing Director @jaaMedia. Mummy. Wife to Dr Hazell @TheTyburn. Play(ed) netball. Trustee @duchenneuk #EndDuchenne. The juggle is real! views mine etc
PURE Paediatric Under.. @PureEducators
50 Followers 35 Following PURE is a pilot project which needs Paediatric Educators to deliver small group teaching sessions to undergraduate medical students throughout the EoE.
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210 Followers 139 Following One of the largest community based study of genetics and health in Pakistani and Bangladeshi people in the North West with @GenesHealth @Bradfordgenes
East Kent Hospitals @EKHUFT
9K Followers 2K Following Official Twitter for East Kent Hospitals University NHS Foundation Trust. This account is actively monitored 8.30am - 5pm Monday to Friday.
Maidstone and Tunbrid.. @MTWnhs
7K Followers 554 Following 👋 We are #TeamMTW | 🏥 Maidstone and Tunbridge Wells hospitals | 💙 7,000+ exceptional staff and volunteers working together to deliver outstanding care.
PRIME @PrimeTrainees
213 Followers 114 Following Paediatric Research In Manchester, England. A North West trainee-led paediatric research network. Connect, develop, showcase & improve research for children 👶
Elena Tsourdi @elena_tsourdi
597 Followers 646 Following Clinical endocrinologist & translational scientist with special interest in bone diseases.Member of ECTS https://t.co/CUO7i76zaq enthusiast🎾
Dr. Melanie Haffner-L.. @MelanieH_L
3K Followers 668 Following apl. Prof. at Ulm University @uni_ulm, Orthopedic Research and Biomechanics @OrthoLabUlm, mum of 👧🏻 and 🐈🐈 scientist, realist, optimist
Mary L. Bouxsein, PhD @MaryBouxsein
2K Followers 508 Following Biomechanical engineer, Ortho Surg Prof @HarvardMed. Dog mom. Trying to reduce the burden of #osteoporosis on earth and in space. Past-President @ASBMR.
Jose M Martínez-Come.. @JMMComendador
3K Followers 3K Following Cardiovascular Surgeon at University Hospital A Coruña (Spain), CHUAC, MD, PhD. Editor-in-Chief of Blog Cirugía Cardíaca Hoy. Committee member of SECCE.
christine english @christi17263564
148 Followers 152 Following Researcher Educator Children’s Nurse Chair/Trustee St Oswald’s Hospice
Prof Veronica Lambert @VLambertDCU
2K Followers 1K Following Full Professor of Children & Family Nursing & Head of School of Nursing, Psychotherapy and Community Health DCU. Public/Patient Involvement Network lead @DCU.
@RareBeacon are holding an online 'Decoding Diagnostics' series of webinars and discussion sessions First webinar 'The fundamentals of genetics and genetic testing' is tomorrow (1st May) 11:00-12:30 (BST) More info and to register: rarebeacon.org/event/decoding… #raredisease #genetics
@RareBeacon @PulseInSync @imperialcollege Thanks so much for sharing! @Imperial_IGHI @HaemoSocUK
Today is #DNADay marking the discovery of the double helix in 1953! It's also an opportunity to marvel at how far we have come since the discovery over seventy years ago #GenomicMedicine #Innovation Brush up on your genomics knowledge here: genomicseducation.hee.nhs.uk
Our CEO, Nick, discussed our journey to repurpose nitisinone to treat AKU at @lifearc1's #LATSS2024 conference🔬
Today @Newlifecharity launches their “Fight For Our Futures” report which reveals that only 2 in 5 families feel their disabled child has all the equipment they need. This needs to change to improve our communities' quality of life. Read the report here: buff.ly/3xQJ9cI
🏁 In just nine days Team MSUK will find themselves at the starting line of the infamous London Marathon. Can you help cheer on and support our ten runners? Find all their pages in our most recent Metabolic Matters Magazine: buff.ly/3xwunrt #TeamMSUK #LondonMarathon2024
We are so happy to say that the winner of @RDStudentVoice's English as a Second Language category Diya Porwal has written a blog all about her experience applying and the advice she would give to future applicants! 😃 m4rd.org/2024/04/16/my-…
Mental health matters! 🧠 At #ECRD2024, we will be co-creating a new toolkit for the rare disease community by exploring best practices and tools that can be drawn on and scaled to form the basis of the new Toolkit. Less than one month to go! Join us 👉 go.eurordis.org/hVPVPA
And it's off! Our brand new ‘This is Me’ #RarePatientPassport is winging it's way around the world 🌍 to the first 571 people who signed up! Giving our RARE community the tools to communicate their #RareCondition their way. Have you got yours? 🦓 #RareDisease
Join us at the MCDS-Therapy final conference on 30th May! We're celebrating the outcomes of this international research collaboration by bringing the MCDS and rare bone disease community together. Register now: ow.ly/P9cx50RakBv
Our global AKU patient registry has launched🎉 "With so few AKU patients spread across the globe, a coordinated international registry is crucial for amassing sufficient data to support clinical research" - Professor Ranganath Find out more here🔗 👉buff.ly/43LJWY9
We have loved sharing #NationalSiblingsDay2024 with you all! Don’t forget there is lots of information and resources on our website sibs.org.uk We will be carrying on the conversation over the next few days, so do join in!
Last Friday we joined Lucy McKay, CEO of @Medics4RareDiseases to talk about all things Metabolic Support UK including our #ThinkAmmonia campaign and our #ThoughtsIntoAction report. This podcast will be released later today, so keep your eyes on their social media channels!
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There's still time to apply to be a Mentor on the Patient Group Mentoring Programme! 🤝 Three reasons why you should apply: 💹 Career development 💪 Develop your leadership skills 💡 Gain exposure to new ideas Hurry! Applications close on 15th April. ow.ly/QOYi50Rb8Gm
⏰Less than a week to go! Apply to be a mentee or mentor on @RareBeacon's Patient Group Mentoring Programme. 👉 Apply by 15 April, here: rarebeacon.org/mentoring-prog… #PatientEmpowerment #RareDiseases
Are you apart of the rare disease community & wish to have a positive impact? @RareBeacon have a fantastic opportunity to become a #Mentee or #Mentor on their Patient Group Mentoring Programme! Applications open until Monday 15th April rb.gy/7lbiah @MFTnhs
We'd like to say a huge congratulations to our English as a second language winner, Diya Porwal! 🎉 📝 Winning essay title: Battling uncertainty: The story of a SCAD survivor Watch this space for Diya's essay coming soon on @RareBeacon 's blog! 🤩 #SVP23
Apply to be a #Mentee or #Mentor on @RareBeacon’s Patient Group Mentoring Programme! Applications are OPEN until 15th April. See why you should apply to become a mentee or mentor on this year's programme… buff.ly/3J4AYMj
Beacon announces the return of the Patient Group Mentoring Programme! Don't miss out on the opportunity to join and expand your network, gain new skills and boost your confidence. Applications close on 15 April 2024. Apply now at bit.ly/3VDcqRL @RareBeacon
Today is #PurpleDay, dedicated to raising awareness about #epilepsy. Will you join us by wearing something purple and sharing your photos with the hashtag #PurpleDayRing20? Let's stand together to support epilepsy awareness. 💜
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