A Mummys View

Telling it like it is

DysNet – Bringing Together the Dysmelia Community

on May 31, 2012

So, many of you who regularly read my blog will know that I am a disabled mummy and was born with hip displacyia or CDH as it was known then), so I have a lower limb abnormality you could say.

I am certainly up for supporting charitable causes and so far in my very small blogging life I have been involved in the #Blogitforbabies Save the Children campaign, the ONE Thrive campaign, I’ve held a Yummy Mummy fundraising event for CLIC Sargent and devised and launched #Blogging4Madeleine in support of finding Madeleine McCann.

I was recently contacted by the lovely Tania Tirraoro who told me about DysNet a new online community to support people with limb differences (otherwise known as Dysmelia) and with having a limb abnormality myself I was only too  happy to help.

The DysNet site went live on Monday 21st May and aims to provide up-to-date information, support and research for people with limb differences throughout the world.

I think this is a great tool, as I remember how my family felt when I was younger and they were coming to terms with my disability. They came across a wonderful charity called STEPS who provided and still continue to provide fabulous support to people with lower limb abnormalities. So, in the current digital age that we live in and with so many people turning to the world wide web for answers to their questions, the launch of a website like DysNet is fantastic in helping provide support to people who either have had Dysmelia for some time, or who are just experiencing it and want to find out more and have that same support that my family had all those years ago.

It is hoped that individuals will contribute to the online knowledge base to share expertise and resources that could benefit others that are in a similar position. By sharing experiences, guidance and advice, lives can be improved and fulfilled, my own experiences are testament to that.

DysNet is also launching an online community called RareConnect. It will be a trusted and monitored environment for everyone involved in Dysmelia to make connections. It will be available in English, French, German, Italian and Spanish, meaning the support can be spread wider, breaking down language barriers and opening up new connections and opportunities.

If you are affected by or want to find out more about Dysmelia then please do visit DysNet

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8 responses to “DysNet – Bringing Together the Dysmelia Community

  1. Special Needs Mum says:

    Brilliant post – thank you so much for all your support!

  2. Am a disabled Mum of two, Thalidomiders had Lady Hoare to thank for supporting us through tough times………….eg sending a fiver for new shoes(was good at getting through them!). My parents reciprocated with fundraising for the charity xx

  3. Thanks for pointing me in the direction of this post. You are doing great at promoting good causes

  4. Great post. I think the internet is a fab way of promoting causes and of supporting communities. It’s an easy way for people in similar situations to connect. Nice to find your blog

    • amummysview says:

      Thank you. I haven’t been going long but have met some amazing people, blogged about some inspiring topics and causes and totally agree it’s a fab way to share and connect. Thanks for stopping by x

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