We are publishing our newsletter electronically for the first time!
Many organizations have moved away from print
newsletters due to the expense involved in printing
and mailing. As mentioned in earlier issues,
we have elected to continue with a print newsletter
for Summer/Fall while using our eblast list to
publish a Winter/Spring newsletter electronically.
We are also using our eblast list to
communicate with you on timely
issues so you can expect to hear
from us more frequently than in
This enewsletter contains research updates,
information about our next Symposium in June
2018, and information about rare disease advocacy
and how you can help.
A Message from the Editor