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Virtual Coffee and Chat Groups

Virtual Coffee and Chat Groups

by | Jun 8, 2020 | News

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 protected]

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: [email protected]

‘Growth Matters’ Podcast Launched

‘Growth Matters’ Podcast Launched

by | Feb 29, 2020 | News

‘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: [email protected]

 

Annual Convention 2019

Annual Convention 2019

by | Nov 1, 2019 | Convention

Annual Convention 2019

The 2019 CGF Annual Convention was held at the end of October at the Warwick Hilton, just outside Stratford-Upon-Avon. It was a wonderful success and with the theme of ‘festival’, a glam-tabulous time was had by all.

The weekend was very well attended, with numbers slightly up on the year before, and we were fortunate enough to have a fantastic array of health professionals with a wealth of knowledge and experience behind them, including: Dr Kate Tatton-Brown who gave an overview on Tatton-Brown Rahman Syndrome, Dr Sue Jackson delivering a presentation on pituitary research with young people, Dr Trevor Cole gave an overview of Sotos Syndrome and Dr Reena Perchard who updated attendees on the BabyGRO study.

Other highlights included a joint presentation by Dr Alice Welham and Dr Chloe Lane on Emotional Difficulties with Sotos Syndrome and a presentation by Dr Claire Higgins on a psychological approach to eating difficulties. On the Saturday afternoon there was a talk by IPSEA who delivered on the cross-condition topic of ECHP and Education Law. The Southampton team, including, Professor Karen Temple, Dr Justin Davies & Professor Deborah Mackay, updated the SRS/SGA group on the latest developments.

The whole line up led to a very well-rounded series of talks and presentation, which hopefully meant something for everyone.

The children were taken good care of with creche facility and the gaming room. The theme in the evening was very popular with many children and adults getting into the festival spirit. Tom and Michaela put on an entertaining show for us and much dancing was done!

Feedback

“it was a really great event and amazing speakers, we did enjoy our time thank you”

“First time there I found it really interesting and helpful. Felt really welcomed and not alone.”

“A wonderful, informative, occasion filled with positivity and joy. Thank you.”

New Blue Badge Rules

New Blue Badge Rules

by | Sep 4, 2019 | News

New Blue Badge rules in England to came into force on 30 August 2019

Last year the government announced its intention to expand the blue badge rules in England to make it easier for people with hidden disabilities such as autism to qualify. However, no date was provided for these new rules coming into force.
Now the government has published regulations confirming that these new rules will start to apply from the 30 August 2019.
As a result of the consultation, automatic entitlement to the Blue Badge will be extended to those in England who score 10 points under the Personal Independence Payment (PIP) mobility test of being “unable to undertake any journey because it would cause overwhelming psychological distress to the claimant”.

Entitlement will also be extended to those who are assessed as having an enduring and substantial difficulty which causes them during a journey to either:

  • Be unable to walk.
  • Experience very considerable difficulty whilst walking, which may include very considerable psychological distress.
  • Be at risk of serious harm when walking; or pose, when walking, a risk of serious harm to any other person.

The new rules also allow local authorities to use a broader range of professionals to assess the nature and effects of an applicant’s disability on their ability to get around.

Derek Sinclair, one of Contact’s Family Finance advisers, said: “We get many calls to our helpline about Blue Badge entitlement and lots of parents have been left frustrated by the absence of any start date for the new rules.

“The current rules make it difficult for many people with conditions such as autism or learning difficulties to qualify, so many families will eagerly await the new rules in August opening up entitlement for many more children and adults with hidden disabilities.”
You can find out more about the different Blue Badge rules in the different nations on the Contact website. 

Managing Growth Disorders Webinar

by | Apr 10, 2019 | News, Research

Managing growth disorders: integrating technology into a personalised approach

You may have missed the webinar on Tuesday 21st May but you still have the opportunity to watch it now.

The webinar discussed non-adherence to GH therapy, why this is a problem and what interventions can promote adherence for children and their families. Specialists will be presenting and debating on barriers to effective management of growth disorders and which tools are available to implement to improve short- and long-term outcomes.

This webinar is suitable for, but not limed to, clinical paediatric endocrinologists, clinical adult endocrinologists, paediatric endocrine nurses, clinical psychologists, and all other healthcare professionals interested in the management of growth disorders.

To view the recording, click the image above.