We are sharing the ask our community for February.
This month we’d like to find out about resources and information for newly diagnosed individuals and families.We understand how difficult a diagnosis can be and we want to ensure that there is suitable information available.
When you or your loved one received a diagnosis of leukodystrophy, what resources and information would you have found most helpful?
We are interested in finding out:
- what topics of information would be helpful?
- which questions would you like answered?
- what format/types of resources would be useful?
Please send your suggestions to info@alextlc.org to share with our community.
