fbpx
  • Home
    • Archive
  • About
    • Vision & Mission
    • Affiliations
    • Contact
    • SNJ Classified- Advertise with us!
    • SNJ’s Disclosure Policy
    • SNJ Training & Consultancy
    • About Tania
    • About Renata
    • Columnists
      • Our Columnists
        • About Angela
        • About Marguerite
        • About Matt
        • About Catriona
        • About Hayley Mason
        • About Siena
        • About Zoe
        • About Hannah Moloney
        • About Hayley
        • About SpeechBlog UK
        • About Malcolm
        • About Jo
        • About Ambitious About Autism Youth Patrons
        • About Nancy
        • About Bren
        • About Barbara
        • MrBoosMum
    • About Guest Posts
  • SEND Review
    • #SENDReview Answer Consultation Question 1
    • #SENDReview Answer Consultation Question 2
    • #SENDReview Answer Consultation Question 3
    • #SENDReview Answer Consultation Question 4
    • #SENDReview Answer Consultation Question 5
    • #SENDReview Answer Consultation Question 8
    • #SENDReview Answer Consultation Question 9 and 10
    • #SENDReview Answer Consultation Question 11
    • #SENDReview Answer Consultation Question 12
    • #SENDReview Answer Consultation Question 13
    • #SENDReview Answer Consultation Question 14
    • #SENDReview Answer Consultation Question 15
    • #SENDReview Answer Consultation Question 16
    • #SENDReview Answer Consultation Question 17
    • #SENDReview Answer Consultation Question 18
    • #SENDReview Answer Consultation Question 19
    • #SENDReview Answer Consultation Question 20
    • #SENDReview Answer Consultation Question 22
  • SEND Resources
    • SNJ In Conversation
    • Webinars
    • Listings and Resources
    • SEND Research
    • Books & Products SNJ Recommends
    • England’s Local Offer websites
    • Glossary of SEND terms
    • SNJ’s Top Blogging Tips for groups and charities
  • SEND Info
    • Distance education resources for children and young people with SEND
    • EHCP Assessment: SNJ’s “Get started” Checklist
    • The SNJ/DfE SEND system Flow Charts
      • SNJ Flow Charts 2018: 1-4 together
      • SNJ Flow charts 2018 single charts
      • SNJ Annual Review Flow Chart
    • SEND reform posts
    • SEND reforms – legal links
  • SEND LAW FAQs
    • SEND Legal Answers
    • EHCP Answers
  • Health
    • Rare Disease
    • Mental Health
  • Donate
  • LogIn/Join
Special Needs Jungle
News, info, resources & informed opinion about Special Educational Needs, disability, children’s physical and mental health, rare disease. Campaigning to #FixSEND
FacebookTwitterInstagramYouTubePinterestLinkedIn
 
  • Home
    • Archive
  • About
    • Vision & Mission
    • Affiliations
    • Contact
    • SNJ Classified- Advertise with us!
    • SNJ’s Disclosure Policy
    • SNJ Training & Consultancy
    • About Tania
    • About Renata
    • Columnists
      • Our Columnists
        • About Angela
        • About Marguerite
        • About Matt
        • About Catriona
        • About Hayley Mason
        • About Siena
        • About Zoe
        • About Hannah Moloney
        • About Hayley
        • About SpeechBlog UK
        • About Malcolm
        • About Jo
        • About Ambitious About Autism Youth Patrons
        • About Nancy
        • About Bren
        • About Barbara
        • MrBoosMum
    • About Guest Posts
  • SEND Review
    • #SENDReview Answer Consultation Question 1
    • #SENDReview Answer Consultation Question 2
    • #SENDReview Answer Consultation Question 3
    • #SENDReview Answer Consultation Question 4
    • #SENDReview Answer Consultation Question 5
    • #SENDReview Answer Consultation Question 8
    • #SENDReview Answer Consultation Question 9 and 10
    • #SENDReview Answer Consultation Question 11
    • #SENDReview Answer Consultation Question 12
    • #SENDReview Answer Consultation Question 13
    • #SENDReview Answer Consultation Question 14
    • #SENDReview Answer Consultation Question 15
    • #SENDReview Answer Consultation Question 16
    • #SENDReview Answer Consultation Question 17
    • #SENDReview Answer Consultation Question 18
    • #SENDReview Answer Consultation Question 19
    • #SENDReview Answer Consultation Question 20
    • #SENDReview Answer Consultation Question 22
  • SEND Resources
    • SNJ In Conversation
    • Webinars
    • Listings and Resources
    • SEND Research
    • Books & Products SNJ Recommends
    • England’s Local Offer websites
    • Glossary of SEND terms
    • SNJ’s Top Blogging Tips for groups and charities
  • SEND Info
    • Distance education resources for children and young people with SEND
    • EHCP Assessment: SNJ’s “Get started” Checklist
    • The SNJ/DfE SEND system Flow Charts
      • SNJ Flow Charts 2018: 1-4 together
      • SNJ Flow charts 2018 single charts
      • SNJ Annual Review Flow Chart
    • SEND reform posts
    • SEND reforms – legal links
  • SEND LAW FAQs
    • SEND Legal Answers
    • EHCP Answers
  • Health
    • Rare Disease
    • Mental Health
  • Donate
  • LogIn/Join
Category: <span>Ehlers Danlos Syndrome</span>
Home Health Archive for category "Ehlers Danlos Syndrome"

Keep up to date with SEND: Get new post alerts!

Become a patron

Category: Ehlers Danlos Syndrome

What’s in a name: Ehlers-Danlos Syndrome gets an important makeover
Ehlers Danlos Syndrome, Rare Disease, special needs

What’s in a name: Ehlers-Danlos Syndrome gets an important makeover

By Tania Tirraoro March 16, 2017 March 18, 2017

It’s rare for a medical condition to have its sub-types reclassified. It happened to autism a couple of years ago and there was uproar as people were worried they would …

Read more"What’s in a name: Ehlers-Danlos Syndrome gets an important makeover"
A 16 year quest to diagnose our rare bendy daughter
Ehlers Danlos Syndrome, Guest Posts, Rare Disease

A 16 year quest to diagnose our rare bendy daughter

By Tania Tirraoro February 17, 2017 October 18, 2018

It’s often difficult to cope and find support when your child has an uncommon or rare condition. Often, there is little understanding by the GP and no more than that …

Read more"A 16 year quest to diagnose our rare bendy daughter"
The pioneering STARS putting patients at the heart of healthcare
Campaigns, Ehlers Danlos Syndrome, Health

The pioneering STARS putting patients at the heart of healthcare

By Tania Tirraoro August 27, 2015 April 9, 2021

Long ago, when my both my kids were under three and I was still perfecting the art of smiling while drowning (lest anyone should think I couldn’t cope with motherhood), …

Read more"The pioneering STARS putting patients at the heart of healthcare"
Professional pleasantries: Why Jenny thinks complaining can sometimes be counter-productive
Ehlers Danlos Syndrome, Guest Posts, Rare Disease, special needs

Professional pleasantries: Why Jenny thinks complaining can sometimes be counter-productive

By Tania Tirraoro February 11, 2015 June 30, 2016

One of the great things about having Special Needs Jungle for me, is getting to meet other women who also happen to have children with special needs. One such laydee …

Read more"Professional pleasantries: Why Jenny thinks complaining can sometimes be counter-productive"
Kids, Mothers and Ehlers Danlos Awareness Month
Ehlers Danlos Syndrome, special needs

Kids, Mothers and Ehlers Danlos Awareness Month

By Tania Tirraoro May 31, 2014 August 19, 2021

It’s the last day of Ehlers Danlos Awareness Month and, of course, I’ve left it to the last day to write anything about it. It’s not that I haven’t done …

Read more"Kids, Mothers and Ehlers Danlos Awareness Month"
SNJ is run by volunteer parents. Everything on SNJ is free to use, but if you like what we do, and you want us to keep doing it, a small donation towards running costs would be really appreciated.
BE AN SNJ SQUAD PATRON!
Flow Charts
get started checklist
ASK IPSEA

Search SNJ

Scanning Pens
send review resources
A Practical Parents Workbook for supporting dyslexic learners

Recently on SNJ

  • The EHCP statistics 2022 don’t tell the whole story. And see who topped the new EHCP LA Hall of Shame!
    May 16, 2022
  • What are the implications of the #SENDReview for deaf children?
    May 12, 2022
  • What the evidence says about the 13 crucial areas for quality in Alternative Provision
    May 10, 2022
  • How can the #SENDReview implement new changes while avoiding the same mistakes of the last reforms?
    May 5, 2022
  • #SENDReview: A vision for Alternative Provision, but where’s the evidence?
    May 4, 2022
  • Bureau of Investigative Journalism finds SEND funding black hole grew by 52% in a year, with one child in a SEND school 412 miles from home
    April 28, 2022
  • #SENDReview: Downgrading SENCO training is a mistake but protected time must be mandatory
    April 26, 2022
  • #SENDReview: What is excellent SEND provision from early years to adulthood?
    April 22, 2022
  • Déjà vu: How will the #SENDReview end the over-promising and under-delivering cycle of support for disabled children?
    April 20, 2022
  • #SENDReview: Why mandatory mediation in SEND appeals isn’t wanted–or needed
    April 14, 2022
  • #SENDReview Chapter 2 under the microscope: National standards, EHCP changes, and limiting choice
    April 12, 2022
  • What does the #SENDReview Green Paper say about funding the future of SEND?
    April 8, 2022
  • 16-25-year-oldPost 16: What’s in the #SENDReview Green paper for 16-25-year-old disabled young people?
    April 6, 2022
  • accountability question#SENDReview Chapter 5 (part 1): The missing accountability question
    April 4, 2022
  • #SENDReview: Defining Alternative Provision and… how about an apology?
    April 1, 2022
  • Publication day: Your first look at what’s in the SEND Review Green Paper.
    March 29, 2022
  • Schools White Paper: what are the implications for SEND?
    March 28, 2022
  • title of postThe new handbook that’s helping every teacher to be a teacher of SEND
    March 25, 2022
  • How much impact will Early Years SENCOs in disadvantaged areas make to boosting early identification of SEND?
    March 23, 2022
  • Moving Towards Neurodiversity Inclusion
    March 21, 2022

Help SNJ keep going!

SEND
SEND Teaching
AUTISM
MENTALL HEALTH
health
DISABILITY
POST16
COLUMNISTS
ASK IPSEa

Resource Listings

  • Parent Carer Foundation
  • Special Needs Kids
  • NHS – Guidance on the “right to have” a Personal Health Budget – Adults
  • Health and Wellbeing Boards in England
  • IPSEA
  • Kleine Levin Syndrome – A parents Guide
  • Diabetes UK
  • The Jigsaw Tree
  • Caregiver’s Corner
  • Joseph and his Amazing Spectrum Coat

Follow us on Twitter

My Tweets
Privacy & Cookies: This site uses cookies. By continuing to use this website, you agree to their use.
To find out more, including how to control cookies, see here: Cookie Policy
  • Home|
  • Cookie Policy|
  • Contact|
  • Privacy|
  • Terms of Service|
Back to Top
FacebookTwitterInstagramYouTubePinterestLinkedIn
Copyright Special Needs Jungle Ltd 2008-2020
All Rights reserved, Special Needs Jungle
Powered by Fluida & WordPress.
s2Member®
Close
Special Needs Jungle