Did you know?
We're all aware that HHT doesn't get a lot of the attention that it deserves--especially by the government. Even so, the HHT Foundation has been in partnership with the CDC Division of Blood Disorders since 2008. Despite a lack of Congressional funding, the CDC has devoted resources to HHT initiatives including:
- Adding HHT as a Stakeholder disorder within the Division of Blood Disorders.
- Sponsorship of CDC Conference (2008) on HHT, leading to the HHT UNC Center of Excellence and included over 50 leaders of medical and medical specialty organizations all to increase HHT awareness.
- Participation of Scott Grosse, PhD as a key speaker at the 20111 HHT Scientific Conference held in Antalya, Turkey
- Creation of an administration Database project demonstrating that HHT is severly underdiagnosed and most recently published: Collaboration was with Dr. Marie Faughnan and appeared in January 2014 issue of Genetics in Medicine. Read more about the database here.
- Participation of Marianne Clancy, HHT Foundation Executive Director, in the Annual Meeting Program committee for their National Meeting held in March 2012. For the first time, HHT was on the program and was discussed in four specific time sessions. Dr. Marie Faughnan was a featured speaker and Dr. Reed Pyeritz from the Pennslyvania HHT Center of Excellence was also on the program.
- Inclusion of Dr. Scott Grosse from the CDC as an advisor on the Kaiser study grant funded by the HHT Foundation.
- Access to HHT information by more than 270 visitors on the CDC's website -- without publicity or funding! Every visit helps to bring awareness to HHT.
The HHT Foundation is w0rking for all families affected to dramatically increase HHT awareness to the public and medical community through development of important partnerships.