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usemydata.bsky.social
use MY data
@usemydata.bsky.social
31 followers 49 following 20 posts
use MY data is unique. We are the only independent UK movement of patients, relatives & carers focussed on the USE of patient data to save lives & improve outcomes.
https://www.usemydata.org.uk/
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usemydata.bsky.social
@‌camrare.bsky.social #RAREsummit25 is packed with energy and ideas!
From inspiring speakers to hands-on workshops like:
💡 Digital Twins in Rare Diseases
🧬 Naming Rare Conditions: Finding the Right Words
Be part of the conversation shaping rare disease innovation:

camraredisease.org/raresummit25
Rare summit branded graphic with text in a hexagon reading: Workshop: Digital Twins: Explore the potential of digital twins, virtual simulations of patients, to transform rare disease research, care, and innovation. Headshot photos of the three speakers: Dr Crina Samarghitean of CSA14 Health; Dr Ellen McDonagh & Evangelina Petsalaki of EMBL-EBI Rare summit branded graphic with text in a hexagon reading: Workshop: Naming Rare Conditions, Finding the right words: Due to inconsistencies in naming conditions, families face unnecessary distress, miscommunication, and difficulty finding reliable information and support. Headshot photos of the four speakers: Sarah Wynn & Francesca Wicks of Unique, Dr Jonathan Roberts from Cambridge University & Dr Nicky Wiffin from Oxford University.
October 22, 2025 at 8:42 AM
usemydata.bsky.social
Same message, fresh look!
We've been hard at work this year polishing our appearance. Now we're thrilled to show off our new logo and website designed to bring our mission, vision and aims to even more patients and to inform even more discussions about patient data.
www.usemydata.org.uk
Pop up banner promoting use MY data. A heart shaped, mutlicoloured collage of paper people on a white background sits beneath the use MY data logo. White text on a red background reads: "The only independent UK movement of patients, relatives and carers focussed on the use of patient data to save lives and improve outcomes." web address: usemydata.org.uk contact@usemydata.org.uk
October 20, 2025 at 5:01 PM
usemydata.bsky.social
We are heading to Glasgow this week for the #HDRUKConference. If you are planning to be there, please do drop by our stand in the exhibition area and say hello.
www.hdruk.ac.uk/about/hdr-uk...
#Healthdata #PatientData #Research
Graphic promoting HDR UK Conference 2025, 15-16 October/Glasgow.
October 14, 2025 at 8:30 AM
usemydata.bsky.social
The countdown is on ⏳ #RAREsummit25 is just a month away (6 Nov)!

The agenda is packed with diverse voices, patient-driven insights & bold innovation.

www.camraredisease.org/raresummit25...

Join the conversation! 💜

Grab your ticket + dinner spot now!
An abstract image formed of an array of triangles in the shape of a forward facing arrow. Some of the triangles contain pictures from the previous summits, illustrating the talks, exhibitions and conversations.  Text: Thurs 6 November at Hinxton Hall, Wellcome Genome Campus.
October 9, 2025 at 9:36 AM
usemydata.bsky.social
Salivary gland cancer is rare, but raising awareness can lead to earlier diagnosis and better outcomes.
However, research is decades behind other cancers.
Sharing data is vital to inform understanding and develop effective treatments & therapies.
www.salivaryglandcancer.uk
#SGCDay
#UseMyData
Graphic image promoting Salivary Gland Cancer Day, 4th October. Silhouette of two people hugging on a turquoise/blue background and a multi-coloured ribbon. Additional text reads: Once Community, One Cause: Standing together in solidarity for positive change.
October 2, 2025 at 9:15 AM
usemydata.bsky.social
Be in the room where ideas begin!

At @camrare.bsky.social #RAREsummit25, 3 patient voices will pitch research ideas shaped by their communities & lived-experience priorities in the Rare Disease Research Network Showcase.

Tickets: www.camraredisease.org/raresummit25/
A large hexagon contains the RDRN logo, with 3 smaller hexagons below containing David Hogan and Scott Hutchings photos, and the Children's Hyperinsulinism logo, all surrounded by triangles in the Rare Summit branding style.
September 30, 2025 at 7:18 AM
usemydata.bsky.social
Commenting on the plan for "a secure single access point to national-scale datasets" use MY data Chair Richard Stephens said:

"This is excellent news for current and future patients, and for our health services. It also shows that the voices of use MY data's Members are being heard and heeded."
Quote from Richard Stephens of use MY data. Text reads "This is excellent news for current and future patients, and for our health services. It also shows that the voices of use MY data's Members are being heard and heeded."
April 8, 2025 at 10:15 AM
usemydata.bsky.social
📣Book your spot at National Patient Data Day!

bit.ly/3Xxsu7U

📅 Tuesday 24 June 2025, Leeds UK

Join patients & stakeholders from across the patient-data world at the UK's first ever patient-led, patient-designed health data conference. Learning, discussion & networking.

#NPaDD #PatientData #NHS
Poster promoting use MY data's National Patient Data Day conference, Tuesday 24 June 2025, Leeds, UK.
March 27, 2025 at 11:34 AM