Processing Search... May Take A Few Moments
Go!
Join
|
Login
Menu
Home
About Us
Our Rares
Our Community
Board and Management Teams
Disclaimers
Connect
Connect your Contact Card
Register for the Site
Information about Membership
Become a Member
Become a Volunteer
Choose your Emails
Contact Us
Registries
Resources
Document Search
Books about Rare Disease
Pharmaceuticals for Rare Disorders
Links to other helpful sites
Look Up Forms/Applications
Programs
Disability Tax Credit
Drive to Thrive - PKU Adults
Join our Advocacy Efforts
Events
Building Bridges - 2025
Virtual Attendance
Chat Cafes
Fundraising
Spare for Rare
HCU - Race for Research
FlipGive
Donate
Documents - 05. Living Life by Roles You Play
Results:
8 Documents
Sort By:
Title
|
Author
Filter
Document Type...
bilingue/bilingual
English
Francais
Keyword...
HCU - Homocystinuria
MSUD - Maple Syrup Urine Disorder
PKU - Phenylketonuria
TYR - Tyrosinemia Type
UCD - Urea Cycle Disorder
Document Sub-Topics
Clinicans
(3)
Parents & Caregiver
(60)
Sibling
(17)
Teacher & Educator
(28)
CAPTURING THE FULL PICTURE: A JOINT POLICY PAPER ON UNMET MEDICAL NEED IN PHENYLKETONURIA (PKU)
(English)
Author(s):
ESPKU, PTC Therapeutics
Rating:
No Rating
Read Reviews
Description:
Importance of Unmet Medical Need in Healthcare Unmet Medical Need (UMN) is essential for identifying treatment gaps and prioritizing healthcare resources. It drives innovation and enhances patient-centered care, particularly in diseases like PKU, which may be perceived as having low unmet needs despite significant patient challenges.
PDF
PKU Nutritional Milestones
(English)
Author(s):
Ajinomoto Cambrooke
Rating:
No Rating
Read Reviews
PDF - English
Liste de produits nutritionnels thérapeutiques couverts par le programme alimentaire québécois pour le traitement de maladies métaboliques
(English)
Author(s):
héréditaires - Juin 2024
Rating:
No Rating
Read Reviews
Description:
Liste de produits nutritionnels thérapeutiques couverts par le programme alimentaire québécois pour le traitement de maladies métaboliques
Link
Classroom News
(English)
Author(s):
Ajinomoto Cambrooke
Rating:
No Rating
Read Reviews
Description:
Starting School.
PDF - English
Dietary information for the treatment of PHENYLKETONURIA
(English)
Author(s):
NSPKU
Rating:
No Rating
Read Reviews
PDF
HCU Food List
(English)
Author(s):
Abbott Laboratories
Rating:
No Rating
Read Reviews
Description:
This guide for Homocystinuria (HCU) and methionine (MET)- restricted meal plans identifies the amount and type of food permitted each day and can make checking and balancing meals much easier. Careful eating helps control blood levels of MET, with positive effects on health.
PDF
HCY Facts
(English)
Author(s):
Texas Dept of State Health Services
Rating:
No Rating
Read Reviews
PDF
Executive Function Situational Awareness Observation Tool
(English)
Author(s):
Ward, Sarah; Jacobsen, Kristen
Rating:
No Rating
Read Reviews
Article
|
Form to Fill Out
|
Info
|
STOP Questionaire
|
Link
|
Link