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New resource – Healthcare Organiser

New resource – Healthcare Organiser

Our new Healthcare Organiser is here!

We’ve produced this organiser to be used by families wishing to keep a personal record of their child’s medical history, current needs, and health services input.

We hope this record will help families keep track of their child’s progress and changing medical needs and support them in the conversations they have with their medical team.

Click the button below to view this organiser online or to download your PDF copy. 

We’ve also produced a print friendly version with less colour on the front and back page – to access this version please click on the button below.

Family fun at Noah’s Ark Zoo Farm

Family fun at Noah’s Ark Zoo Farm

Meet Up: July 2024

Earlier this month families joined together at Noah’s Ark Zoo Farm for a lovely day out, for our second Meet Up event.
 
Our Vice-Chair Jessica hosted the day in North Somerset, and was joined by a great group of families enjoying time together in a fun, family friendly location.

Future Meet Ups

After the success of  this July event and our first event in February we’ll be holding more Meet Ups in the future at a range of venues and locations.

To find out more, and to also find details of our Meet Up Host volunteering opportunity, visit our Meet Ups webpage.

Adrenal Insufficiency Support Packs now available!

Adrenal Insufficiency Support Packs now available!

We are delighted to share that our Adrenal Insufficiency Support Pack is here and available to order.

The pack includes a booklet, stickers, keyring and folder.

Our fab Growth Nurse Specialist Sally has created this short video, below, to demonstrate the contents of the pack and show how it all works.

How to order your pack

To order your copy please contact [email protected] including a note of your full name and the address for us to send your pack to.

We’ve also launched our new Adrenal Insufficiency webpage, here.

We’re extremely grateful for funding received which has made it possible to produce these packs.

Share your views and ideas with our Youth Ambassadors!

Share your views and ideas with our Youth Ambassadors!

Share your views and ideas!

Our fantastic team of Youth Ambassadors had their first meeting recently – it was wonderful to get this brilliant programme started.

The Youth Ambassador Programme is for young people aged 16-25 years old who have, or had experience of, a growth condition or concern who are taking on this voluntary role to help make sure that young people’s voices are heard on what matters to them.

There were some brilliant ideas discussed at the first meeting, and our Youth Ambassadors would love to hear from you, fellow young people, with your views and ideas on what you’d like to see the team explore and develop, and for them to work with the CGF to introduce for fellow young people.

To add your thoughts visit our Insta story in our highlights, pop them in the comments box here, or email us at [email protected].

To find out more about the Programme or to apply to be a Youth Ambassador, visit our Youth Ambassador page.

Growth Hormone Injection Device – Paid External Research Study

Growth Hormone Injection Device – Paid External Research Study

Paid External Research Participation Opportunity

MindSight Research are looking to invite people to participate in a research study which is looking at an injection device to administer medication to people diagnosed with one of the following conditions:

• Growth Hormone Deficiency (GHD)
• Turner Syndrome (TS)
• Small for Gestational Age (SGA)
• Prader-Willi Syndrome (PWS)
• Idiopathic Short Stature (ISS)
• Chronic Renal Insufficiency (CRI)

This is study will hopefully lead to better access to the most suitable medical devices for administering Growth Hormone medication.

 

What would participation involve?

We would be looking for people to participant in a 90 minute in person one to one session, where they will review a device and its instructions and asked specific questions around it. They will be compensated for their time.

 

Who are we looking to speak to?

People who are aged 18+ and have administered injectable medication for someone with one of the following conditions:

• Growth Hormone Deficiency (GHD)
• Turner’s Syndrome (TS)
• Small for Gestational Age (SGA)
• Prader-Willi Syndrome (PWS)
• Idiopathic Short Stature (ISS)
• Chronic Renal Insufficiency (CRI)

Adolescents aged 12-17 who have been diagnosed with one of the above conditions and have administered injectable medication to themselves (they would attend with a parent/guardian as a chaperone).

 

Compensation for participation

Participants in this study would receive a monetary amount for their time and contribution. This would be £150 for 90 minutes. This would be paid via bank transfer.

For adolescents, this is the total amount for their participation and chaperone.

This is inclusive of basic travel costs, however we can review this on an individual basis for those travelling further afield.

The organisers will also kindly donate £20 to the CGF where participants note our charity name for where you heard about this research opportunity.

 

Dates

The dates we are currently looking at are: 22nd July 2024 – 3rd August.

 

Locations

We have study days booked in the following locations, however if you are interested in participation and live outside of these, please do get in touch as we will be considering additional locations dependent on interest.

London
Birmingham
Bristol
Manchester
Glasgow

 

How to apply?

If you would like to register your interest to participate please follow the below link: https://eu.panelfox.io/s/9b2ffca0-fc65-4b4b-861d-d3d5dc98e85f

You can also email us: [email protected]

Or if you would prefer to discuss on the phone you can can call us on 0117 462 4700

Mindsight Research have shared the below flyer.