Roald Dahl's Marvellous Children's Charity was out in force with their rare disease nurses that they fund to support children and families.
Dr Larissa Kerecuk launched BCH's Star Appeal to create a holistic children's Rare Disease Centre. They're aiming to raise £3.56 million - pocket change to many, I'm sure, but it would make a world of difference to thousands of children. Read more about the planned centre here.
I gave a little talk about SEND education, after Happy Little Hugh blogger, Emma Murphy, spoke movingly about life with her son who has an undiagnosed rare condition.
It was lovely to see Dr Larissa, Lauren from SWAN UK did a great job spreading awareness and the appeal was front and centre. It was also fab to meet another SEN blogger, Alison of Complicated Gorgeousness.
Best of all was meeting with my friend, SNJ columnist and Patient Advocate, Renata Blower and two of her three fabulous young 'uns, Lilia and Dominic. Renata, if you recall, was instrumental in creating the first Undiagnosed Nursing Post for Great Ormond Street Hospital in London.
Lilia kept busy with my camera and took some lovely photos, which you can see in the slideshow below. Please do donate to this amazing cause if you can.
Look out tomorrow for my Top Tips when your child is diagnosed with a rare disease on SNJ on the rarest day of the year 29th February!
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She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
Latest posts by Tania Tirraoro (see all)
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