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.
ID:510484741
http://www.rarebeacon.org 01-03-2012 16:28:52
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💡 Have you explored Charity Digital 's glossary of charity terms and definitions!
Check out the full glossary and expand your knowledge here: 👇
ow.ly/Cws250RtCmR
It’s been great to hear lots of discussions and thoughts this afternoon during the panel session!
And lots of networking opportunities…🤝
#McdsTherapy
Excited to be in #Newcastle today with the Beacon for Rare Diseases team, hosting the Final Conference on behalf of MCDS Therapy!
Really interesting to hear from everyone who has been involved in delivering this project and clinical trial over the past 5 years. 💊
It's lunch time here at the #McdsTherapy final conference!
If you're in the room, be sure to stop by Beacon for Rare Diseases's exhibition stand to learn more about their work or if you're online, head to their website to learn more here: rarebeacon.org
It’s been a great morning so far!
There’s been lots of insightful discussions from Michael Briggs 🔬🏏🎸🐝🦔🍺🌱, Michael Wright, the Carmichael family and a panel session on the trials and tribulations of the trial.
#MCDSTherapyFinalConference
It’s almost time for the MCDS-Therapy Final Conference!!
Lights, camera…almost action 😜
Get here safely!
#McdsTherapy
Read the next issue of Rarity Life, an online publication dedicated to shining a light on the lives of individuals affected by rare diseases, disabilities and cancer.
This issue features Percy's story, who lives with Prader-Willi Syndrome.
Read here:
ow.ly/nGNQ50RU3aq
.European Achondroplasia Forum developed a patient-held consultation guide to enable adults w/ #Achon to manage their own care w/ their primary provider
The checklist is a framework for routine reviews & highlights key symptoms of spinal stenosis/obstructive sleep apnoea
pubmed.ncbi.nlm.nih.gov/38748332/
Join Media Trust on their new webinar - How to write compelling copy for charities!
📅 5th June 2024, 10:00-12:00
Learn how to capture your audience's attention with meaningful copy.
Register here: 👇
ow.ly/B0yx50RTY2i
'Following a rise in the number of younger people and disabled people using its services LibertyBus is working to make them more accessible.'
Read more about how they are improving accessibility in the article from BBC News (UK): 👇
ow.ly/IcXH50RSn4J
New survey! 🚨
Developed by the Public Health Agency in partnership with Queen's University Belfast 🎓 (QUB) and Ulster University (UU), this survey looks to better understand the experience of people affected by rare diseases and how this can be improved through research.
👇
ow.ly/ypRx50RSmom
Join Media Trust 's upcoming training and learn how to elevate your presence on LinkedIn! 💡
📅 4th & 6th of June, 10am-12pm
Register here:
ow.ly/NIUy50RSl6b
Register now for NHS East Genomics upcoming training session!
💡 Information is power: Supporting patients and with Lynch Syndrome and Rare Conditions.
📅 22nd May, 12pm - 1pm
Register here to secure your spot: 👇
ow.ly/R9uu50RFuJp
Join the NHS Race & Health Observatory and Uni of Nottingham #WeAreUoN at their upcoming event launching their report examining ethnic inequalities in genomics and precision medicine.
📅 5th June, 14:00, 15:45
📍 Online
Register here: 👇
ow.ly/Bq7g50RFtX6
As May is Huntington’s Disease (HD) Awareness month we're resharing Ep8 of our #RarelyHeard podcast series, created in partnership with Beacon for Rare Diseases
You can listen to the brilliant Ashley here:
rarelyheard.org
#HD #HuntingtonsDisease #HD Awareness #RareDisease