Latest News: Information
Left In Lockdown - DCP Survey Results
15 September 2020 / Posted in: Information, Support
Back in May, the Disabled Children's Partnership ran a survey to understand more about the impact the coronavirus pandemic and lockdown was having on disabled children and young people, their siblings and parents. Over 4,000 people completed the survey. Read about the results.
Muscular Dystrophy UK - SMA Seminar
14 September 2020 / Posted in: Information, Treatments & Research, Support
The first seminar of their 'MDUK Muscles Matter 2020' series took place during SMA Awareness Month and was an update on research into SMA and a panel discussion on potential treatments and managing the condition. Watch it here.
Same But Different - 'A Glimmer of Hope' Calendar Photography Competition
03 September 2020 / Posted in: Information, Support
The winning images will be used to create a calendar that will celebrate the people behind rare conditions, as well as helping to raise awareness. The competition is open now and runs until the 22nd September.
New Extensions to the Access To Work Scheme Announced
02 September 2020 / Posted in: Information, Support
Covid-19 is changing the way we work and impacting working environments and arrangements. With many employers asking workers to adapt to a new environment, Access to Work can play a key role in supporting disabled people to retain, return to and move into employment.
Contact - Back to School Advice (England)
28 August 2020 / Posted in: Information, Support
The charity Contact for Families with Disabled Children, have published some guidance around this to help answer questions and concerns that parents may have ahead of their children going back to school in September.
Grant Support Available to Families on Lower Incomes in England
28 August 2020 / Posted in: Information, Support
National charity Family Fund, received £10m from the Department for Education to provide extra grants. The grants can be used to buy computers and play equipment as well as household items such as cookers and fridges.
Survey Exploring Access to the Standards of Care for People who have SMA in the UK
28 August 2020 / Posted in: Information, Support
The John Walton Muscular Dystrophy Research Centre in Newcastle invites one respondent for each child / adult who has SMA to take part in gathering this important information that will help guide future practice.
Campaign for Step-Free Access at all Train Stations
24 August 2020 / Posted in: Information, Support
The Step-Free Access Campaign, set up by Ian Cook, is about petitioning for step-free access at all railway stations, and on trains, as so many are still inaccessible for disabled people. Add your voice to the campaign.
Back to School – Webinar & Online Q&A
18 August 2020 / Posted in: Information, Support
Many parents of children with serious health needs have concerns and unanswered questions about their children returning to school in September. WellChild have organised an online Q&A, on 20th August, with a panel of experts from Department of Education, law, health and education to help answer some of these burning questions.
Share Your Views on Care Coordination for Rare Conditions
14 August 2020 / Posted in: Information, Support
Researchers at University College London are looking for participants for a study which looks at how care of people who have rare conditions is coordinated in the UK, and how patients and healthcare professionals who treat rare conditions would like them to be coordinated.
