NICE have published a quality standard for faltering growth
The faltering growth quality standard covers recognising and managing faltering growth in babies (aged up to 1 year) and preschool children (aged over 1 year). It describes high-quality care in priority areas for improvement.
CGF trustee, Rachel Pidcock, was a lay member on the specialist committee and contributed towards the quality standard, the CGF was also a stakeholder in its development.
The standard aims to improve the identification, management and support related to faltering growth and can be found at the link below.
NICE quality standards describe high-priority areas for quality improvement in a defined care or service area. Each standard consists of a prioritised set of specific, concise and measurable statements. NICE quality standards draw on existing NICE or NICE-accredited guidance that provides an underpinning, comprehensive set of recommendations, and are designed to support the measurement of improvement.
The RARE Youth Revolution has begun
RARE Revolution Magazine have announced the launch of the RARE Youth Revolution movement, along with its new online home at rareyouthrevolution
This online platform is giving a voice to the youth of RARE, sharing news and views on a fresh and innovative, accessible platform, with content that is created by children and young people affected by rare disease—FOR children and young people affected by RARE, ensuring their voices are heard.
A dedicated online rare disease platform for young people
There are many adult communities and support groups in the rare disease space, but children and young people have struggled to find an outlet, and following the success of their #RAREYouthProject pilot in 2018 they have been working hard to address this inequality and fill that void.
The website is a focal point for this movement, empowering young people to share their experiences through storytelling, be it writing, video, art or audio, and to enable them to become connected to what is happening in the rare world—sharing news and events, science and technology, charity and advocacy, in an age appropriate way through the voices that matter to them—theirs!
Join the RARE Youth Revolution
Would you like to join our RARE Youth team to help guide the direction of this movement?
Perhaps you’re an aspiring blogger or vlogger and would like to contribute your story?
If you are then drop the youth editor, Daisy Marriott an email at firstname.lastname@example.org
Virtual Support Groups
We are really excited to announce the launch of a new support group service. We are introducing ‘coffee and a chat’ virtual groups. A one-hour online meeting where you can get together to share support and information.
The groups will be condition specific, so will be directly relevant to you and we will be running groups for most, if not all, the growth conditions we support.
To run the groups across all conditions, we need the help of some eager volunteers. Would you like to be a virtual support group leader? The technology will be handled by the CGF so we are not after IT-wizards. What we do want is someone friendly and with good knowledge of the particular growth condition. If that is you and you have an hour or so to spare each month, please email us at: email@example.com
We will bring news of future groups on our website, but please also check out our social media pages.
The first group is for people connected to Multi-Pituitary Hormone Deficiency and is on:
Monday 15th June at 2.00pm
For safety reasons the groups are only open to Members of the CGF, either full or associate level. Full Membership is £25 for people in the UK, Associate Membership is free.
To become a member, please visit: Membership
To attend the Coffee and a Chat group, please email us at: firstname.lastname@example.org