RARE Youth Revolution

RARE Youth Revolution

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 dmarriott@rarecommunciation.com

www.rareyouthrevolutionmagazine.com

Virtual Coffee and Chat Groups

Virtual Coffee and Chat Groups

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: info@childgrowthfoundation.org

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: info@childgrowthfoundation.org

Annual Convention 2020 – Cancelled

Annual Convention 2020 – Cancelled

2020 CGF Annual Convention – CANCELLED

Given the severity of the current COVID-19 pandemic, and after much deliberation, we have made the decision to cancel this year’s CGF Annual Convention, that was to have taken place from 2nd to 4th of October in Warwick.

It is still unclear exactly what will happen in the weeks and months ahead but with talk of social distancing lasting for some time, we feel it would be unwise to go ahead. Our members and families are very important to us and your health is the top priority. It saddens us to bring this news, but we know it is the right decision and we hope you understand.

If you have already booked your place at the convention, we will be in touch soon and will refund your payment as soon as possible. If you have already made your hotel reservations, please remember to cancel. Please be aware though, that many of the hotel staff are not currently working, so we would recommend leaving this for a few weeks, and you can then cancel directly with the hotel staff, otherwise your call will probably go to central reservations.

We are looking to host some virtual meetings in October and are currently engaging with health professionals to develop an online programme. We will be in touch nearer the time with details.
We also hope to hold a social event sometime in early 2021 and will let you know as soon as we can if this will be possible.

Our thoughts and best wishes are with you all at this time and we look forward to seeing many of you in 2021.

Thank you

‘Growth Matters’ Podcast Launched

‘Growth Matters’ Podcast Launched

‘Growth Matters’ – podcast launched

We are delighted to announce the launch of our very own podcast, which we have appropriately called ‘Growth Matters’.

Growth Matters is a monthly ‘chat magazine’ that will bring latest news, research updates, details of growth conditions, personal experiences of living with rare conditions, interviews with health professionals and so much more. As the series progresses, it will build into a library of invaluable information for parents, friends and those with a growth condition. It will also develop to be a useful learning tool for health professionals, and schools, and other interested parties who want to find out more about the conditions we support.

You can see why we are so excited!

The podcasts will be available from our BuzzSprout web page, and you will also be able to find them through podcast apps.

The all important link is:

‘Growth Matters’

Head over and start listening now!

If you have any feedback on the podcast, we would love to hear it. Also, if you would like to tell your story through one of the casts, or you are a health professional who would like to be interviewed then please also get in touch: info@childgrowthfoundation.org

 

Particpants Needed for Growth Hormone Therapy Study

Particpants Needed for Growth Hormone Therapy Study

Particpants Needed for Injectable Growth Hormone Therapy Research

A UK based market research agency called Bryter is looking for UK residents to take part in research studies on the subject of injectable human growth hormone therapy.

They have two studies which will be running in the early part of 2020:

Study 1:

A two week study where participants will download a user friendly App to their smartphone through which they can share their experiences of using injectable human growth hormone therapy. This study is open to parents and caregivers of children using this therapy as well as patients that are managing their own treatment The objective of this study is to gain some insights about the patients’ treatment routines and views of treatments available. There will be a series of questions and short tasks that can be answered using text, pictures or videos and won’t require more than about 10-minutes commitment per day at a time that is convenient. Some participants will then be invited to take part in a follow up in home interview lasting 120-minutes, parts of which will be filmed

Participants will be offered an incentive of £150 as a thank you for completing the app based survey, paid via Amazon voucher or bank transfer. Those participating in the follow up in home interview will receive a further £100. 10% of the incentive (or more if they wish) will be donated to your choice of our registered health charities.

Study 2:

An online survey, roughly 20 minutes in length on the subject of using injectable human growth hormone therapy. This study is open to parents and caregivers of children using this therapy as well as patients that are managing their own treatment Participants would complete the survey on a computer or other connected device.

Participants will be offered an incentive of £30 as a thank you for completing the survey, paid via Amazon voucher or bank transfer. 10% of the incentive (or more if they wish) will be donated to your choice of our registered health charities.

What to do if you are interested in taking part?

To check if you are eligible to participate in one or more of these studies, please click on the link below which will direct you to an online questionnaire where you will answer some questions to test for your suitability to participate. A member of the research team will then contact you with more details:

Eligibility Survey

If you have any questions or concerns at this stage you can contact the Bryter research team direct at the following email address: emelia.smith@bryter-uk.com 

Or you can contact the Child Growth Foundation jenny.child@childgrowthfoundation.org

If you do take part in the studies, could you please mention the Child Growth Foundation, thank you.