Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


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Rare Disease Day Events
23rd February 2016

Image: rare_disease_day.jpg_medium.pngOur campaign Rare Disease UK will mark international Rare Disease Day Monday 29 February by hosting a number of Parliamentary Receptions across the UK. Details below:
Image: samebut_differentrdd_medium.jpgWelsh Reception hosted by Darren Millar AM
When: 6pm to 8pm, Tuesday 23 February 2016
Where: National Assembly for Wales - The Senedd Cardiff, South Glamorgan CF99 1NA
Image: samebutdiffrdd_medium.jpgRare Disease UK is The National Alliance for people with rare diseases and those who support them.
This year there were parliamentary receptions in all four of the home countries to raise awareness in Rare Disease Week 2016.

Claire went along to the Welsh Reception, hosted by Darren Millar AM, at the National Assembly for Wales on Tuesday 23rd February. Julie was heading off to Belfast and London and Sarah was covering the reception in Edinburgh.

Darren Millar, AM, Shadow Health Minister, Conservative Party, welcomed everybody. The other speakers included; Tony Esmond, patient affected by an ultra rare condition, Dr Andrea Edwards, Clinical Director, All Wales Medical Genetics Service and Alastair Kent OBE, Chair of Rare Disease Uk and Director of Genetic Alliance UK. Alastair was on a whistle stop tour for the next week, attending all four Uk events as well as European events to mark the week. He talked about the Rare Disease Strategy, launched in 2013 which is a six year vision incorporating 51 commitments designed to improve health and social care for rare diseases . He spoke about the key findings from the latest survey from rare disease patients, (first conducted five years ago). Getting a diagnosis is key and he painted a picture of variable quality and improvements in services being made, but still some way to go before achieving the aims for 2020. Other examples were patients not being provided with adequate information and then looking on the internet which is full of good and bad information, significant delays for diagnosis and for some patients never getting a diagnosis, long waiting times for appointments, lack of co-ordinated care and access to treatment quickly were all issues continuing to face many patients.
All of these things I am sure are issues facing many of our members affected by 22q11 DS.
Another project, 'Same but different' was displaying The Rare Project. The photograph project designed to raise awareness of rare conditions whilst exploring our attitudes towards those with a disability. This was one of the photographs on display.