What’s New?

The April 2016 website update includes the following changes and additions.  Thank you for visiting the ECDGA webpage!

• We now offer 10 more languages on the website!  These new pages offer a limited amount of translated text in each language.  Chinese  Dutch  French  German  Greek  Hebrew  Italian  Norwegian  Portuguese  Spanish  These are also accessible from the top menu “Languages”.

• A new event page has been added to provide information about the upcoming 2016 Patient and Family Gathering.

• Six new Studies & Trials have been announced at MD Anderson in Houston, TX.  Also, the NIH Phase 2 Therapeutic Trial of the Use of Dabrafenib and Trametinib was updated with links and additional information.

• Three new Care Centers were announced since the last update.  A new US center is located in Missouri.  International additions include Lebanon and Brazil.

• Chat Session summaries have been added for 2016.

• Press Releases highlighting the new ECD Care Centers, fundraisers and Rare Disease Day activities and proclamations are available.

• New members have been added to the Member Locations.

• New fundraiser success and examples from the recent Rare Disease Day events are included on Host Fundraisers.

• A Canadian and a US patient story were added to the Printed Stories page.

• Announcements include highlights from recent events.

• Two journal articles written about ECD have become available online.  View 2016 additions, Detection of an NRAS mutation in Erdheim-Chester disease and  Recurrent RAS and PIK3CA mutations in Erdheim-Chester disease, in Medical Journal Articles.

• Updated the contact information for Ophthalmologist Kleanthis Manousaridis, MD PhD in Knowledgeable Doctors.

• An ECD Awareness Week page has been created to help the community learn more about this special occasion and how to make this year’s event simple and effective.