Parent to Parent programs offer parent to parent support as a core resource for families with children who have a special health care need, disability, or mental health issue. Through a one to one "match" experienced support parents provide emotional support to families and assist them in finding information and resources. Parent to Parent programs […]
Tag Archives | fabry disease
National Fabry Disease Awareness Month
EVENTS April 15, 2014
April is National Fabry Disease Awareness Month. For more information about Fabry Disease Awareness or to find an event near you please click here.
Charles Kleinschmidt Fabry Family Weekend Camp at Victory Junction
EVENTS July 19, 2013
The National Fabry Disease Foundation will hold the Charles Kleinschmidt Fabry Family Weekend Camp at Victory Junction. The event will take place is September 20-22 at Victory Junction Gang Camp in Randleman, NC. Application are currently being accepted. For more information, please click here.
Facing Fabry Together
MEDICAL NEWS May 24, 2013
Check out the Facing Fabry Together Web site. It is a site dedicated to telling the stories of people and their families living with Fabry Disease. To visit the site please click here.
Cross-Country Walk for Fabry Disease
EVENTS May 15, 2013
Courtnay Midkiff is walking across the country to raise awareness for Fabry Disease. Fabry Disease is a rare genetic lysosomal storage disorder. To watch an interview that was recorded in Memphis, TN, please click here.
Fabry Disease Awareness Month
EVENTS March 25, 2013
April is Fabry Disease Awareness Month. The National Fabry Disease Foundation and the Fabry Support and Information Group are working together to try and have as many state governors to make formal proclamations about Fabry Disease Awareness Month. For more information about Fabry Disease Awareness Month please click here.
Fabry Disease Awareness Month!
EVENTS April 2, 2012
April is National Fabry Disease Awareness Month! What are you doing to raise awareness about Fabry Disease? For more information please click here.
National Fabry Disease Foundation Community Newsletter
MEDICAL NEWS December 16, 2011
The National Fabry Disease Foundation publishes a monthly newsletter with great information for patients and their families. Links to past newsletters are also available. To read this month’s newsletter, please click here.
Gaucher and Fabry Patient and Family Conference
EVENTS August 1, 2011
Mark your calendars for the Colorado Lysosomal Disorders Program Gaucher and Fabry Patient and Family Conference on August 27th. The conference will take place at Children’s Hospital Colorado from 9:00am to 11:30am. There will be a couple joint sessions as well as breakout sessions. Please click here for more information.
National Fabry Disease Foundation Blog
MEDICAL NEWS July 22, 2011
The National Fabry Disease Foundation has started a new blog! Jerry is writing the blog. He is writing with the purpose to raise awareness about Fabry Disease as well as keep everyone informed about events in the Fabry disease community.