False allegations of Fabricated or Induced Illness (FII) are on the rise in the SEND community. Parent and Carer Alliance are offering a free webinar to help parents know how to protect themselves.
The thing that worries me most about my disabled daughter as she gets older is who will understand her. Who will really get to know who she is, and what …
Last week I attended the European Conference on Rare Disease being held in Edinburgh*. It was three days of listening to presentations about developments in rare disease research and medicines and …
As all parents and carers of children with additional needs know, it’s the little things that keep us awake at night. You know the kinds of things I mean. Those …
We should all have access to the healthcare we need: good quality, affordable care without fear of discrimination. This is our human right. ~ Patient Solidarity Day 2015 ~ …
Earlier this week I attended the SEND seminar of the law firm, Boyes Turner who represent families having difficulties getting the SEN or disability support they need. The firm is …
I had a very busy day on Tuesday at the 25th Anniversary conference of national and international charity, Genetic Alliance UK. There is some really exciting work being done in genetic …
I was invited to speak at a conference last weekend called #RoadMapforLife at Swiss Cottage school, a special school in north London. Writing the presentation, I was reminded that even …
Today is Rare Disease Day and during the past week we have been featuring a number of families who have been affected by rare conditions. Even if you’re not especially …
As I’m a fun kind of gal, yesterday I watched the livestream of the #rareEU2015 meeting in Brussels held by EURORDIS, Europe’s rare diseases patient advocacy alliance. Well, listened to …
As an online manager of international patient communities for many different rare diseases, I receive emails every day from parents and affected people looking for help and information about their …
