Our Parent Rep, Lisa Beaton, hosts Genomics England's latest podcast episode! The panel including our CEO Louise Fish discuss the impact on parents of children with rare conditions, who received a no primary findings result after diagnostic whole genome sequencing.

We're trying to raise £17,000 this March! 👉 ow.ly/Kx2N50QZxME A 5 year wait for #diagnosis come with a lot of difficulties. That's why we raise awareness among senior decision makers, #healthcare professionals and the wider public, to ensure these wait times reduce.

Support our campaign for better coordinated care! Help us continue to influence senior decision makers, raise awareness among healthcare professionals and the wider public, and provide a strong voice for the rare community Donate to our March campaign 👉 ow.ly/lqKN50QZykp

The countdown is on for this year’s Undiagnosed Children’s Day on Friday 26 April. Please share this post to help more families with undiagnosed children find SWAN UK (syndromes without a name) sooner #UCD2024

Good luck today, Sarah, and thank you! Please consider donating to support this amazing runner raising awareness for people living with rare conditions if you can 🏃‍♂️

Please nominate Genetic Alliance UK charity no 1114195 for a chance to win £5,000. It is one nomination per charity per person, so you can choose us as well as nominating a condition-specific cause that is close to your heart! 🔬🧬❤️

Fantastic to speak with Genetic Alliance UK members and partners at today’s LifeArc Translational Science Summit, and inspiring to see their incredible art exhibition dedicated to the rare disease community 🖼️ 🧬

Just one more day until #UndiagnosedChildrensDay when Genetic Alliance UK spread the word about what it is like to live with an undiagnosed genetic condition. We want to make sure families who need support can find our support network SWAN UK (syndromes without a name) and member Unique faster 🧬 🦢

Please donate £10 to SWAN UK this Undiagnosed Children's Day to help us reach families sooner and support our vital work throughout the year geneticalliance.org.uk/donate/

Thank you to all the children, families, teachers, health professionals and volunteer parent reps raising awareness this year. Can you help families find the support they need from Genetic Alliance UK support network SWAN UK (syndromes without a name) sooner? #UCD2024 #SyndromesWithoutAName 🧬 🦢

📣 Help us reach more families this Undiagnosed Children's Day by sharing our reel! 📣 SWAN UK (syndromes without a name) is the only dedicated community for UK based families of children aged 0-25 years old who are searching for a genetic diagnosis. #UCD2024 #SyndromeWithoutAName ow.ly/CCLT50RoLoA

Check out this amazing video by Megan aged 10 who is raising awareness for Undiagnosed Children’s Day today! 👀 🧬 🦢

£2.5 million has been made available by Great Ormond Street Hospital Charity for research into rare or complex childhood illness in a national funding call. Further information about the call can be found on their website 👉 ow.ly/TOfi50RA870 Deadline for applications is 26 June 2024

I’m keen to hand the baton on to an inspirimg leader to implement Genetic Alliance UK’s ambitious new strategy and lead our talented and experienced staff on the next stage of this journey. If you would like an informal chat before deciding whether to apply, please get in touch!

It's #RareChromoDay! Celebrating anyone living with a rare chromosome or gene condition and their families and carers. Please show your support... More at rarechromo.org/rarechromoday #unique #RareChromosomeDisorder #GeneDisorder #RareDisease #Genetics #UniqueButNotAlone #rarechromo

This is lovely from @GeneticAll_UKmember Unique who are raising awareness on #RareChromoDay 🎵 SWAN UK (syndromes without a name) SWAN UK - Cymru

Delighted that ⁦Genetic Alliance UK⁩ Chair ⁦Liz Porterfield⁩ has been awarded an MBE in today’s King’s birthday honours. It’s a pleasure to work with Liz and lovely to see her commitment and hard work recognised! geneticalliance.org.uk/news/mbe/

Genomic screening in newborn babies could identify rare conditions faster, so families can find the support they need earlier. Carefully-designed, large-scale trials are vital to generate the data needed for rigorous evaluation of whether this will work 🧬 nature.com/articles/s4159…

👀 If you’re interested in reading the full paper in Nature Medicine, use the following link: rdcu.be/dLgVH Prof Zornitza Stark Exeter Rare Disease Siddharth Banka Sarah Wynn Dominic Wilkinson James Buchanan Daniel MacArthur Richard Scott Genetic Alliance UK SWAN UK (syndromes without a name)

I’m delighted to share the news that Mark Flannagan will be the new Chief Executive of Genetic Alliance UK from Monday 2 September 2024.  I’ll be working with Mark for a period of induction and handover in September to provide continuity for members, staff and the community.