Official account for Fahr Beyond. We are a charity that supports people with #FahrsDisease & #Fahrs like conditions, to educate & research. #Parkinsons #PFBC
United Kingdom
Joined February 2017
- Tweets597
- Following488
- Followers214
- Likes759
FahrBeyond retweeted
I was deeply honoured to give a talk on disorders with brain iron deposition at the MDS Congress 2026 in Seoul, South Korea @movedisorder @UCLIoN @UCLIoN_DCMN @MDC_IoN_UCL @QS_RareMD @IonSynapse
FahrBeyond retweeted
Our clinical and research developments remain close to people with rare movement disorders.
Yesterday, we met the community with familial brain calcification in the webinar organised by @FahrBeyond.
Please watch the webinar and reach out if you are keen on hearing more on the CALCIFADE trial, which is actively recruiting participants in the UK.
@QS_RareMD @kailashbhatia @amitbatla @MDC_IoN_UCL @UCLIoN_DCMN
Yesterday's webinar with @FraMagrinelli & Dr Balck was really informative. An update on the CALCIFADE study, news about clinical network development, participation opportunities,& insight into the latest research on the genotype-phenotype correlation. See youtube.com/playlist?list=PL…
Yesterday's webinar with @FraMagrinelli & Dr Balck was really informative. An update on the CALCIFADE study, news about clinical network development, participation opportunities,& insight into the latest research on the genotype-phenotype correlation. See youtube.com/playlist?list=PL…
📣📣 One last push to get more participants on the CALCIFADE study
The Calcifade trial launched for UK participants earlier this year at the National Hospital for Neurology and Neurosurgery, @UCLIoN
@MDC_IoN_UCL @uclh
The trial needs a few more participants, are you over 18, living with #Fahrs / Primary Brain Calcification, and a UK Resident?
If so reach out to Dr Magrinelli, [email protected]
More info at findastudy.uclh.nhs.uk/trial…
Please look & share: @ignatius_sancho @PARareDisease @rarepatientvoic @TheEllenShow @ITVCentral @GenomeMedicine @RichardMeek8 @wellcomegenome @denis_campbell @BIDMC_PD_Center @edballs @BBCFergusWalsh @ShaunLintern @rarediseasesnet @AlisonHammond @CeliaSawyerTV @IAMJHUD
Our Community Impact Report is now live.
Built from the experiences of 165 people living with Fahr’s Disease worldwide.
Thank you to @NeuroAlliance, @GeneticAll_UK, @eurordis & @RareBeacon for supporting this work.
Read here: doi.org/10.6084/m9.figshare.…
#Fahrs #RareDisease #PFBC
Please have a look & share @BBCHughPym @GdnHealthcare @KingsIoPPN @RDCworldwide @RDRUKHub @RareDiseaseScot @RareDiseases @CheckOrphan @eurordis @HealthITNews @bbchealth @RosemaryConley @JOCampbellMP @QS_RareMD @IonSynapse @SEgenomics @WorldPDCongress @ParkinsonsEU @MedicsForRare
Our Community Impact Report is now live.
Built from the experiences of 165 people living with Fahr’s Disease worldwide.
Thank you to @NeuroAlliance, @GeneticAll_UK, @eurordis & @RareBeacon for supporting this work.
Read here: doi.org/10.6084/m9.figshare.…
#Fahrs #RareDisease #PFBC
FahrBeyond retweeted
Our Community Impact Report is now live.
Built from the experiences of 165 people living with Fahr’s Disease worldwide.
Thank you to @NeuroAlliance, @GeneticAll_UK, @eurordis & @RareBeacon for supporting this work.
Read here: doi.org/10.6084/m9.figshare.…
#Fahrs #RareDisease #PFBC
FahrBeyond retweeted
We’ve published our International Patient Survey Data Analysis Report.
Insights from the patients worldwide helping improve understanding of Fahr’s Disease.
A massive thank you to @NeuroAlliance, @GeneticAll_UK.
Read here: doi.org/10.6084/m9.figshare.…
#Fahrs #RareDisease #PFBC
A big thank you to @WarksFreemasons for the donation of £1,500.
We are humbled by your ongoing support for us. As a small charity, and only dedicated charity in the world for Fahr's. This donation will go into resourcing our new efforts of a fortnightly patient support group.
FahrBeyond retweeted
✒️⚠️Please share this post and encourage everyone to sign our open letter to The Secretary of State for Health and Social Care here: bit.ly/3TC5lSt Together we can show the Government we need a national neuro plan now. Thank you.
Join us tomorrow for our live stream event!
We’ll be discussing the Fahr Beyond International Survey on Fahr’s Disease Patient Experience, sharing insights and highlighting why your voice matters.
Watch live here: youtube.com/live/PyLPMTZMFlQ…
We look forward to seeing you there!
Thank you to everyone who applied for the Community Engagement & Support Officer post, we had nearly 32,000 views of the job advert, 728 people looked at the job description, and 272 people applied for the post.
Reminder the closing date is tomorrow 24th July 2026 at 9:00am BST
Thanks to @TNLComFund, we are pleased to be recruiting for a pt Community Engagement and Support Officer.
This is an exciting role for helping to better connect the community of people living with Fahr's Disease.
See:
charityjob.co.uk/jobs/fahr-b…
@GeneticAll_UK @QS_RareMD
#Fahrs
We have a fabulous response to the vacancy that we have advertised. There are only 9 more days left to apply!
#fahrs #charity
Thanks to @TNLComFund, we are pleased to be recruiting for a pt Community Engagement and Support Officer.
This is an exciting role for helping to better connect the community of people living with Fahr's Disease.
See:
charityjob.co.uk/jobs/fahr-b…
@GeneticAll_UK @QS_RareMD
#Fahrs
FahrBeyond retweeted
The rare disease landscape can be complex to navigate – that's why we've collaborated with @lifearc1 to launch Raremap. It's a searchable directory of rare disease organisations so you can find out who does what and how to connect. Visit Raremap now: tinyurl.com/3atbumrt
Thanks to @TNLComFund, we are pleased to be recruiting for a pt Community Engagement and Support Officer.
This is an exciting role for helping to better connect the community of people living with Fahr's Disease.
See:
charityjob.co.uk/jobs/fahr-b…
@GeneticAll_UK @QS_RareMD
#Fahrs
We’ve published our International Patient Survey Data Analysis Report.
Insights from the patients worldwide helping improve understanding of Fahr’s Disease.
A massive thank you to @NeuroAlliance, @GeneticAll_UK.
Read here: doi.org/10.6084/m9.figshare.…
#Fahrs #RareDisease #PFBC
Our Community Impact Report is now live.
Built from the experiences of 165 people living with Fahr’s Disease worldwide.
Thank you to @NeuroAlliance, @GeneticAll_UK, @eurordis & @RareBeacon for supporting this work.
Read here: doi.org/10.6084/m9.figshare.…
#Fahrs #RareDisease #PFBC