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Leukodystrophy Support

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What's your reasons for joining our online community?

What's your reasons for joining our online community?

We are hoping to offer grants to help individuals and families affected by Leukodystrophy to access counselling. Would you be interested?

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We are hoping to offer grants to help individuals and families affected by Leukodystrophy to access counselling. Would you be interested?

We are hoping to offer grants to help individuals and families affected by Leukodystrophy access counselling. Would you be interested?

We are hoping to offer grants to help individuals and families affected by Leukodystrophy access counselling. Would you be interested?

How would you like to give consent for the NHS England IWMD Registry to share your data in new research? Would you prefer to give consent:

What posts would you like to see from Alex TLC in Leukodystrophy Support?

What posts would you like to see from Alex TLC in Leukodystrophy Support?

What posts would you like to see from Alex TLC in Leukodystrophy Support?

What posts would you like to see from Alex TLC in Leukodystrophy Support?

Alex TLC Digital Community Weekend...What entertainment would you like to see offered Sunday afternoon at the end of the weekend?

Which topic would you like Karen to cover this Friday on the coffee morning Zoom call? Please let us know and join on Friday at 11am!

For patients AND carers: Have you/your loved one received mental health support to help you cope with ALD/AMN?

Were your family offered genetic counselling when you/your loved one were diagnosed with ALD/AMN?

If you have any symptoms of ALD or AMN, has this affected your employment?

As a carer of someone with ALD/AMN, has your loved one's condition had an effect on your own mental health?

What ALD Life services do you access to support you/your family with ALD?

How long did it take from when you first saw your primary doctor about you or your son's condition to when you saw a specialist?

How long did it take for a diagnosis of ALD or AMN to be made?

Do you have access to hydrotherapy?

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