HCU Network America
Toggle navigation
What Is HCU?
Classical HCU
Classical HCU Infographic
Remethylation Disorders
Cobalamin Defects
Cobalamin Cofactor Infographic
Research & Trials
Classical HCU Research
Remethylation Disorders Research
Homocystinurias Data Collection Program
Homocystinuria Biobank
Research Funding Thermometers
Newborn Screening
Resources
Is it HCU?
Know the Difference: Homocystinuria Versus Hyper-Homocystinemia.
Find a Clinic
Clinic Outreach
Patient Clinic Survey
Recent Diagnoses
Classical HCU (CBS Deficiency) Toolkit
New Family Diagnosis Guide for Cobalamin Disorders
Guidelines for diagnosis and management
Transition to Adulthood
Back to Care
Formula and Medical Food Vendors
Compounding Pharmacies
Assistance Programs
Insurance Coverage
Low Protein Foods Assistance Fund
Toolkits and Checklist
Print Request Form
HCU Community Cook Book
Beverages
Breakfast
Breads
Starters, Salads, Soups and Snacks
Dinner
Dessert
Videos
Other metabolic organizations
News & Events
Events
Conferences
Virtual Race
HCU Awareness Month
#GivingTuesday
E-Newsletters
Dear Methia: ….
Connecting the Dots
Special Edition Topics
HC&U: A Homocystinuria Podcast
Fundraising
Casual for a Cause
Virtual Race
#GivingTuesday
Contact Register
About Us
Board and Advisors
Fundraising Committee
Key Patient Needs
Patient Stories
Cobalamin Patient Stories
MTHFR and Remethylation Disorders Patient Stories
Network Affiliations
HCU Network America Brochure
Contact Us
Donate
How to Donate
Reports and Financials
Fundraising Committee
Merchandise
Medical Appointments
Home
Transition to Adulthood
Tools and Resources
Medical Appointments
A: I can communicate independently with my medical team during visits.
Collapsed Sample Description
A: I feel comfortable speaking with my doctors and asking questions without my parent or caregiver.
Collapsed Sample Description
A: I decide who I want information shared with (family, friends etc.).
Collapsed Sample Description
A: I know how to contact various medical professionals (Primary, Genetics team, specialist).
A: I can set up doctor appointments and blood draws.
A: I meet independently with my medical team during my visits.
A: I know whom to contact for non-urgent needs (refills, questions, etc.).
A: I am comfortable making major medical decisions.
A: I can provide a summary of my medical history (such as dates and types of surgeries, family history, allergies and medications).
A: I know my rights to keep my health information private.
A: I can get myself to doctor appointments.
A: I know who my various medical providers are and their roles in my health.
A: I remember to implement new procedures and follow up items from doctors.
A: I know how to get your medical records if needed.
A: I have an up-to-date medical summary, either printed or digital.
A: I know how to fill out medical forms.
Sign up here to keep up to date with events, newsletters, and more!
