Loretta MacInnes

Founder, Writer, NED, Rare Disease Advocate

[Loretta MacInnes @LorettaMacInnes]

How time flies! Fabry Awareness Month 2024 is coming to an end: https://t.co/q46vY63rpj
#Fabry #Raredisease #FabryAwareness

[RARE Revolution Magazine® @RareRevolutionM]

We've been working with patients, families & clinicians to develop a health & care #RareDisease passport template to help communicate key medical & care information. The phase 2 report is just out!
@camraredisease #RareDiseaseDay2024 #RareDiseaseDay #RDD2024 #RDD

[Loretta MacInnes @LorettaMacInnes]

Promising gene therapy trial results for #FabryDisease:
One-year data indicate ST-920 stabilized kidney function, reduced disease severity, and improved life quality. https://t.co/Hrspxbtki1 #genetherapy #Fabry #raredisease

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

A HUGE thank you to all our amazing media partners helping us get the word out about #RAREsummit23 - We’ll see you tomorrow! https://t.co/fItpn5stvY

[Loretta MacInnes @LorettaMacInnes]

@GemmaChand is opening #RAREsummit23. Looking forward to a great day.

[Loretta MacInnes @LorettaMacInnes]

Thursday 12 October is RARESummit - the bi-annual rare disease event organised by @camraredisease . Really looking forward to hearing from policy-makers, researchers, patient voices and innovators. If you can’t be there you can follow #RAREsummit23

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

#RAREsummit23 innovation challenge news!

Experts from @AlexionPharma @camraredisease @EasternAHSN @SanofiUK @BritSocGenMed have shortlisted 5 entries, invited to pitch live on 12 Oct. We’re excited to hear these innovations might transform lives of people with rare disease!

[Loretta MacInnes @LorettaMacInnes]

It’s great news that there’s another treatment for #Fabry. However in what context is ‘a small co-pay’ applicable on the #NHS?
Elfabrio was approved in the U.K. https://t.co/Ge7C6g7dqC

[Loretta MacInnes @LorettaMacInnes]

Lots happening in #rarediseaseresearch.
#raredisease #research https://t.co/kDLx4GoDhJ

[The King's Fund @TheKingsFund]

There are 42 integrated care systems across England, covering populations of around 500,000 to 3 million people. But why are they needed, and how do they work? Read our ICS explainer to find out. https://t.co/tupBH4TBus

[Beacon for Rare Diseases @RareBeacon]

'The New Opportunity to Help Rare Disease Patients'🧡

The article from @medcitynews discusses investment in rare diseases and how global spending on rare diseases is estimated to reach $260 billion by the end of 2025.

Read more here:

https://t.co/7Xz2j1jSgJ

[Mito Research @MitoResearch]

#RAREsummit23 is an incredible opportunity to bring the #raredisease community together & the Newcastle Mito Team are excited to be involved because we are definitely #StrongerTogether 💪🏻💚

@NIHRNewcBRC @NCL_RareDisease @jwmdrc @4Lilyfoundation @mitomusclelab @MDUK_News

[Genomics Education @genomicsedu]

Calling all healthcare professions – why not begin your genomics knowledge journey today with a short course? This Genomics 101 module introduces the testing process, including why, when and how genomic testing is done: https://t.co/F8seCeV0rv

[Loretta MacInnes @LorettaMacInnes]

It's time for a #GenomicsConversation. Thank you @genomicsedu for all the work you are doing to raise awareness and understanding of #genomics and #healthcare.

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

Don’t miss these #GenomicsConversation sessions with @East_Genomics team @Kate_Sci and our Chair @GemmaChand exploring #RareDisease on Wed & #Genomic medicine for your patients on Fri

[Loretta MacInnes @LorettaMacInnes]

Do you have a rare disease or care for someone who has a rare disease? Here’s an important survey about #newbornscreening from @eurordis and @GeneticAll_UK: https://t.co/sg7rkzwXs6. Make your voice heard. #raredisease #Fabrydisease #genetics #genomics

[Loretta MacInnes @LorettaMacInnes]

Looking for abnormal, clumped features called mulberry bodies in a person's urine may help in the diagnosis of Fabry disease, a study found. https://t.co/XHCtvRMbSe

[Loretta MacInnes @LorettaMacInnes]

Blood levels of periostin, a protein associated with kidney injury, may be a valuable marker for kidney damage in Fabry disease, a study says. https://t.co/rmNQs0eQrC

[My Fabry Disease @MyFabryDisease]

ST-920, a potential gene therapy for Fabry disease, has been granted fast track designation by the U.S. Food and Drug Administration. https://t.co/wD6bmHilvm

[CheckRare @CheckRare]

2023 Orphan Drugs: PDUFA Dates and FDA Approvals
Click on the link below👇 to view the list of important regulatory dates for all orphan drugs for 2023.

https://t.co/43UC64oZKm

#rarediseases #drugapprovals

[Steven Gill @454Steven]

This morning’s #59events 🚲: a breathtaking sunrise. Event 27. 31x 59km to go, the last event being a 322km 🚲. Raising 💵 for @MPSSocietyUK and #YoungLivesvsCancer. #charity #cycling #mps #4thechildren #fabrydisease #kindnessmakesadifference #thanksforyoursupport 🙏