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Adrenoleukodystrophy (ALD) Online Support Group

A little help from ALDLife


#1

I am posting this information from the ALDLife website in case it may be beneficial for some of you, particularly the financial assistance program:

07 November 2014 – Financial support. It is essential for some families suffering from ALD and AMN, as getting access to day-to-day care, equipment and therapy can be financially exhaustive. This year, we’ve received more than 20 grant applications from patients and families with ALD and AMN worldwide. We give grants to patients and families with ALD and AMN for a wide range of purposes, including:
• Care, equipment and therapy – up to £1,000
• Bone Marrow Transplant – up to £300
• Bereavement – up to £300

Sometimes patients and families also require support from others going through similar circumstances in their local area. This year, we’ve allowed more than 40 patients and families to get in contact with someone going through similar circumstances. If you would like to get in touch with someone, please send an email to ■■■■■■■■■■■■■■■■.

Practical information and resources can also be useful for patients and families to help them manage their condition more effectively. For example, we have a list of practical information and resources, such as links to medical identification bracelets and guide for people with Addison’s disease and adrenal insufficiency. There are also a wide range of other organisations that provide practical support, advice and information to patients and families for example, to get access to care, equipment, bereavement support or medical insurance. You can find a list of useful organisations listed on our help, info and care links page.

Here is a link to the website: http://www.aldlife.org/news-research/latest-news/