Practical Information & Resources: Please check out!

26th March 2015


Personal Independence Payment (PIP)
In 2013, Personal Independence Payment (PIP) was introduced by the Welfare Reform Act 2012 to replace Disability Living Allowance (DLA) for people aged 16 to 64. The new welfare benefit has been slowly rolling out throughout parts of the United Kingdom, with 10 new areas expected to be using PIP from 30 March.

With recent changes to the welfare benefits system, some patients and families with ALD and AMN have been confused about accessing welfare benefits for themselves or their child . That’s why last year we invited Marian Gell, benefits adviser at Contact A Family, to give a presentation about different benefits available for patients and families at our Get Together Family Weekend.

We have collated some useful links to help you through recent changes to the welfare benefits system. Disability Rights UK have produced a free guide to making a claim, including advice about completing your claim form. Contact A Family also have practical information about PIP including a list of areas that use PIP.

Other resources
We have also recently been made aware of Queen Elizabeth’s Foundation for disabled people (QEF). QEF provide support to disabled people to help them gain new skills and increase independence for life. They also recently introduced QEF Kids, a new service for children with disabilities or complex needs. Please check poster below for more information.

QEF kids

You can find a list of useful links to help you get access to help, information and care for your or your son’s condition on our Help, info and care links page
Image: Falco, Pixabay


20 hours ago

ALD Life

Emory University is looking for families in Georgia with individuals who were diagnosed through newborn screening with ALD, as part of efforts to include ALD in the Georgia newborn screening panel. Participants would be speaking with Emory University via phone or email at their convenience. If you would like to give your input, please reach out to Dawn Laney with Emory University at or ‪404-778-8518‬. ...

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