Policy & Engagement Manager for Scotland Genetic Alliance UK & Rare Disease UK Views my Own
Joined June 2013
- Tweets1.4K
- Following933
- Followers483
- Likes1.8K
Natalie Frankish retweeted
A big and warm welcome to new Genetic Alliance UK member, @gri_uk.
GRI-UK are a parent and family-led, patient-centred charity registered in the UK, dedicated to supporting people affected by GRI gene disorders.
Learn more on their website: gri-uk.org/
ALT GRI-UK and Genetic Alliance UK's logos sit side by side. GRI-UK is a new member of the alliance.
Natalie Frankish retweeted
We need 1 million Scots!
We need you! Help health researchers find cures for diseases by registering with SHARE today.
It only takes 2 minutes to sign up – registerforshare.org
Natalie Frankish retweeted
To mark National Adoption Week we're highlighting our guide designed for those considering adopting a child who is 'Unique' due to a chromosome or gene disorder.
Download at: bit.ly/UniqueAdoption
#NationalAdoptionWeek #AdoptionSupport #Unique #AdoptiveFamilies
Natalie Frankish retweeted
A huge early milestone! Credit to our members who have fed into this project as it has developed and to the @GenomicsEngland team for prioritising the contribution of the rare community. @GeneticAll_UK is a proud partner in the all important evaluation of this study.
First newborns join screening for 200 rare diseases bbc.in/3zMOZNt
Natalie Frankish retweeted
Which healthcare professionals are involved in my genomic healthcare journey? Amanda Pichini explains 🧬
Tune in to our latest podcast explainer where Amanda goes into more detail, in less than 10 minutes.
Listen to the full episode here: ow.ly/2yBL50TAX2s
Natalie Frankish retweeted
The public are being asked for their views on a palliative care strategy consultation published by Public Health Minister @Jenni_Minto.
More information here: bit.ly/ImprovingPalliativeCa…
Amazing!!
How awesome do our Ride for Rare cyclists look?!
Different teams of genetic professionals across the UK (and Ireland) were out on Sunday in rain and shine. They have currently raised a whopping £11,000 for SWAN UK and @Unique_charity. THANK YOU!
👉 givewheel.com/fundraising/21…
Natalie Frankish retweeted
📣Calling all families with an interest in speech and language in rare genetic conditions
💻 Please join us for a special @Unique_charity webinar to learn more!
✍️Sign up today!
Sign up for our webinar, 'Speech & Language in Rare Genetic Conditions', hosted by @Unique_charity w/Prof Angela Morgan from Murdoch Children's Research Institute & the University of Melbourne. Tues 17th Sept, 1pm (UK): bit.ly/SLRGC
#SpeechandLanguage #FamilySupport
Natalie Frankish retweeted
Most people with MS will need support from family and friends at some point.
It's only natural that many carers see themselves first as partners, children, or friends. But using the term 'carer' can help you get extra support.
Find out more: brnw.ch/21wLzV1
ALT Support for family, friends and carers
Natalie Frankish retweeted
A global collaboration led by scientists at the University of Oxford has discovered that genetic variants in a specific gene cause a rare neurodevelopmental disorder (NDD). theguardian.com/science/arti…
@nickywhiffin @GenomesProject @Unique_charity @GenomicsEngland
Natalie Frankish retweeted
👇 Easy Read Party Manifestos available as of 2nd July 2024:
✅ Labour Party: Yes
lnkd.in/eAphUhRH
✅ Conservatives: Yes
lnkd.in/eUWcmwzg
✅ Liberal Democrats: Yes
lnkd.in/evsxs-qh
✅ Green Party: Yes
lnkd.in/eP2DAmHZ
Natalie Frankish retweeted
Did you know there are #pulmonaryfibrosis (PF) support groups around the UK?
The groups provide emotional support, information and practical guidance.
Anyone living with and affected by #PF are welcome to join.💜
Find your local support group:
actionpf.org/information-and…
ALT A photo of two women chatting at a a table.
Natalie Frankish retweeted
We are introducing a new model of neonatal care in Scotland for the smallest and sickest babies
We want to hear from families to inform implementation and design of the new model - our consultation is open for views until 8 July 2024
Respond here➡️ ow.ly/uuCX50Sn7Xg
Natalie Frankish retweeted
Support to take a break is now the most in-demand type of support, up from fourth in 2021, requested by 60% of all carers in 2023. Read the full findings here:
ow.ly/Z9GM50SjS99
ALT Quote that says “I am so tired, I don’t have the energy to go on a break.”
Natalie Frankish retweeted
👶Check out this useful guide from @SpeechAndLangUK on what to expect from language development between 6-12 months, remember all children do things in their own time but if you have any questions about your child speak to the Health Visitor 👉speechandlanguage.org.uk/hel…
Natalie Frankish retweeted
It's Turner Syndrome Awareness Day please RT to help raise awareness, thank you. #Turnersyndrome #TurnerSyndromeAwareness #EmmaWoodsMemorialFund
Natalie Frankish retweeted
Are you a professional working in #genetics or #healthcare or a related field? How did you first hear about Unique? Please take a few moments to tell us more here.... bit.ly/UniqueProfSurvey
Natalie Frankish retweeted
Care coordination helps to achieve safer and more effective care. Invite your community to ask their candidates to pledge support for better care coordination for people with genetic, rare and undiagnosed conditions using our toolkit. ow.ly/1cCu50SlrHb #PLEDGE4GRU
