Peer Support Network and Ask Our Community
Peer Support Network
We link individuals and families affected by leukodystrophies so you can share experiences and gain mutual support. The way we do this is by putting families in contact with each other who have the same condition or with similar symptoms which can be especially helpful in the case of the very rare or unnamed leukodystrophies. If you would like to talk to other families, then please let us know by emailing firstname.lastname@example.org
Ask Our Community
We have recently introduced ‘ask our community’ which enables you to ask our community for support and advice. You can do this by contacting us directly and we will then share asks on our website, social media and community emails. Below are our current ‘ask our community’ requests, please get in touch if you can help:
Doctors in Cyprus with ALD knowledge
Are you or a family member affected by Adrenoleukodystrophy (ALD) and are living or lived in Cyprus? Did you see a knowledgeable doctor who had a good understanding of your condition? If yes, then please let us know.
Care at home
Do you or a loved one receive care at home? If so, how much do you receive and do you feel that it’s enough? It would be great to hear about your experiences.
If you can help, then please don’t hesitate to get in touch by emailing email@example.com