🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

Open now! I'm honoured to be chairing the judging panel, and can't wait to hear about all the great collaboration going on in our #RareDisease world 🤜🤛💥 See below for further details; applications are open until 17 Nov

Love this! ❤️

What a fun idea! Are you releasing an EP...?

1 week left to apply for this great role, speaking up for the people whose data is curated by Genomics England - informed by lived experience

Yet another “disabled people shouldn’t have nice things” example. My beautiful Hampstead flat wasn’t wheelchair accessible which was OK until I nearly died of sepsis and lost the ability to walk. I had to have someone pack up my flat & it broke me But aye, vanity > lives. Sure.

Are you passionate about health technologies and making a difference for patients, carers and communities? We’re looking for lay members to join the Medical Technologies Advisory Committee and Diagnostics Advisory Committee. Find out more: nice.org.uk/get-involved/o…

📢Young researchers working with people with lived experience hold the key to the future of #rarediseaseresearch! 💥Calling all early career researchers to apply and highlight your research engagement in #PPIE 🔗tinyurl.com/PPIEAward 💫Deadline : 17 Nov 2024

👉 Out now Nature Reviews Genetics: we CAN and we SHOULD do more to enable #genomic data sharing! 🧬🌏 👉Best practice examples and 12 actions we can all take together 👉 rdcu.be/dWfsu GA4GH Australian Genomics Genomics England NHS Genomic Medicine Service AllofUsResearch UK Biobank Our Future Health

Are you thinking of applying for the inaugural Rare Disease Research UK early career researcher award for PPIE? You have just over a fortnight left to get your application in 📆 rd-research.org.uk/uncategorized/… Rare Disease Research UK #RareDisease

This sounds very promising! Great to see ERDERA getting off the ground 🚀 #RareDisease #partnership

The Genomic AI Network (GAIN), a national community shaping AI in genomic medicine, launches soon! 🎉 Join the online launch event on Nov 14, 11:30am GMT. Register now! 👉 bit.ly/4fnfTuv

Trigger warning: article mentions unpaid carer murder suicide and moves on to discuss the huge stresses all unpaid carers are under due to so many failing systems. Do get a cuppa and give it a read Thanks go to Kirsten Robertson for pulling all of this together.

🚨 One week to enter! 🚨 Are you a researcher looking into rare conditions? This award is a great way to help your work get recognised. Learn more and apply by 17 November 2024. Please share with anyone that qualifies. ow.ly/6RUi50TXVg1

This month's Research Seminar is on Tuesday 26 November, 2 to 3pm. We'll hear from Research Network members Dr Daniel Greene, Dr Prima Sanjaya and Dr Esa Pitkanen on their research using data from the National Genomic Research Library🔬 Register for free: ow.ly/x4tB50TY1aZ

This was great fun to make! Hope you enjoy it, too... Genetic Alliance UK Unique CureGRIN

Off to #FOG25 ! Really looking forward to hearing about some of the amazing developments in #genomics over the past year, catching up with some friendly faces 👋 AND sharing more of my #poems and new #postcards exploring parent/family perspectives of #RareDisease life 🙌

"Society should drive science, not vice versa" - Sim Baker and Sharon Jones, Genomics England : engagement, inclusion and ethics are the key ingredients #FOG25

If you or someone in your family has had genome sequencing through the NHS, we want to hear your opinions. This will help us to shape our study and make sure it is tackling issues that are important to you. Please contact Holly to find out more via [email protected]

It's #RareDiseaseDay2025 - our community is growing every year, as new genetic disorders are discovered. It's more important than ever for decision-makers to understand what life is like for people like us. linkedin.com/pulse/more-tha… Genetic Alliance UK CureGRIN #GRIN1

#PPI opportunity for patients and public contributors! Warwick Clinical Research Psp looking for input on their statistics projects for rare disease. Meeting 10am, 9 May in Coventry. Please share, and contact [email protected] for details Cc @useMYdata