1st March 2022
Did you know that yesterday was Rare Disease Day? It’s an opportunity to raise awareness and generate change for the 300 million people living with a rare condition worldwide. To mark the occasion, yesterday also saw the publication of England’s first-ever Rare Diseases Action Plan, setting out specific and measurable targets for the coming year based on the national priorities identified in 2021’s UK Rare Diseases Framework.
You will find plenty of information by exploring our A-Z directory of medical conditions, reading our free online Living with a rare condition parent guide on the support available for families living with a rare condition, speaking to other parent carers in our Facebook community, and following our advice on how to find trustworthy medical information online.
You can also learn more about rare conditions on our website.
Visit our webpages all about diagnosis to find out about the process of getting a diagnosis and how to get support if your child doesn’t have a diagnosis. You can also download our free parent guides about Living without a diagnosis and about Developmental delay.
If you have got any questions about getting Direct Payments for your child from your local authority's social services department in England you can ask our advisers during a special Facebook Q&A on 10 March between 10am and 12pm!
To take part, make sure to join Contact's private Facebook Group for parent carers where the Q&A will take place. Once you're added as a member, confirm your attendance in the Q&A event page here.
Direct payments in England can be made to families whose children are considered eligible for services and support following an assessment of their needs. Parent carers can use direct payments to buy and organise these services themselves. Find out more about them on our website.
Parents who have a child leaving primary school this summer will have made their applications for a secondary school place in England last October. Today, 1 March, is the day families in England find out what school their children have been offered. Find out more about what happens next, including what you can do it you aren’t happy about the school your child has been offered.
Visit our page on applying for a school place, where we go into more detail about your options if you’re not happy with the offer. You can find out what support you can expect for your child on our page Extra support in school.
If you want to talk to other parents about education or any other topic, join our Facebook group.
We are pleased to announce that the Contact Weekly Lottery had its third £1,000 winner – Natalie, a parent carer from Shefford! She matched five numbers in our weekly draw, landing her the windfall. Natalie was so pleased to have won, she almost couldn’t believe her luck.
We’re so pleased Natalie’s chances have turned into a win – and if you join us, you could be next! Play Contact’s Weekly Lottery for as little as £1 a week for a chance to win up to £10,000 – all while helping us make a difference to thousands of families with disabled children in the UK.
Parents of clinically vulnerable children have told us of their concerns over Covid-19 restrictions, which in England were lifted in full last week.
We understand that some families who have a clinically extremely vulnerable child might find the changes concerning. If you are worried about how this will affect you and your family, it could help to talk to our Listening Ear team, who provide emotional support and practical advice.
Contact Cymru invite you to join our Home Education Wales webinar on 22 March (10:30-12:00) with guest speakers from legal firm Irwin Mitchell. This webinar is for Parent Carers of children with disabilities and additional needs living in Wales – with and without a diagnosis. Book now to reserve your spot!
Lots of you joined Dr Martin Samuels, a respiratory specialist at children’s hospital Great Ormond Street, at our special Facebook Live interactive session last week to find out more about respiratory viruses in very young children. Don’t worry if you missed it – you can watch the recording on Facebook or on Youtube.
Read our advice on protecting your child from respiratory virus (RSV) and what to do if they develop bronchiolitis.
Watch our short animation about RSV and bronchiolitis.
Join our baby and toddler email group if you have a child aged 5 or under to get our latest advice to help you and your child stay well.
Our all-in-one book has all the information and help you need to enjoy family life. Get your free copy of our Helpful guide for families with disabled children straight to your letterbox.
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If you haven't already, subscribe to our other email newsletters or get your free copy of our Helpful guide for families with disabled children straight to your letterbox.
And don't forget, you can call Contact's free helpline on 0808 808 3555 between 9.30am-5pm Monday to Friday, use the Live Chat on our website, or submit a query online.
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