April 2016:


NORD Announces 20 Rare Disease Patient Groups Selected to Develop Natural History Studies as Part of FDA Cooperative Agreement

Big Pharma thinks of Natural History Study Registries as a game changer.


April 2016:

Jewish Georgian

Fighting A Rare Disease


(Page 5, right hand column)

April 2016:

Town and Village Synagogue

APBD in the Town and Village Synagogue monthly newsletter



February 2016:

Our effort towards a potential cure for APBD have been covered by Yedioth Ahronoth on Sunday. This effort helps us raise money to bring LTKE to the clinic as well as assist in generating public interest in APBD.

We want to thank Mr. Ze’ev Guttman, who brought our efforts to the attention of Yedioth and has helped us raise public attention to the project during recent months!

Yedioth Ahronoth

January 2016:


So rare it is hard to find a cure for disease, APBD Revealed

http://m.maariv.co.il/lifestyle/health/Article-521131 (hebrew)
Orly – Mariv (English translation)