Additional Resources
Transplantation Organizations and Information
Cystic Fibrosis Foundation – Organization that conducts research on cystic fibrosis, and offers support for those living with it.
Intestinal Rehab & Transplant Unwrapped – Educates and supports the intestinal disease community in managing intestinal rehabilitation, intestinal failure, and intestinal and multivisceral transplantation.
Intestinal Rehab & Transplant Unwrapped Kids! – Provides educational tools and activities for kids with numerous intestinal conditions, including short bowel syndrome and intestinal rehabilitation.
Liver Education Advocates – Organization that informs the public on Fatty Liver Disease, and provides support for liver transplant patients.
Lung Transplant Foundation (LTF) – Focuses on lung transplant research, as well as education and support for lung transplant recipients and their caregivers.
National Kidney Foundation (NKF) – Organization focused on kidney disease education and research, kidney transplantation, kidney patient advocacy, and more.
Oley Foundation – Fosters community, advocacy, and more for those living with home IV nutrition or tube feeding.
Student Organ Donation Advocates (SODA) – Organization that educates student populations on the importance of organ donation, and helps student become ambassadors for organ registration and donation.
Cystic Fibrosis Foundation Resources
Lung Transplant Today
Talking About a Lung Transplant
Deciding to Get Listed for a Lung Transplant
The Journey Through A Lung Transplant
Models of Palliative Care Delivery for Individuals with Cystic Fibrosis
Centers Near Me
Find A Lung Transplant Center
Referral and Evaluation
Being Referred as a Candidate for Lung Transplant
Going Through an Evaluation for a Lung Transplant
What If You Aren’t Eligible for a Lung Transplant?
Planning to Pay for a Transplant
What to Do While Waiting for a Transplant: Maintaining Your Health and More
Models of Palliative Care Delivery for Individuals with Cystic Fibrosis
Lung Transplant Surgery and Recovery
Coping After Recovery
Caring for Your New Lungs
Life After a Lung Transplant
Models of Palliative Care Delivery for Individuals with Cystic Fibrosis
Collaborating Complex Care Needs for Cystic Fibrosis Lung Transplant Recipients
Position paper: Models of post-transplant care for individuals with cystic fibrosis
Community and Staying Connected
BreatheCon
CF Circles
CF Peer Connect
Community Voice
ResearchCon
Social Support During the Transplant Process
Reports, Workshops, and Consortium
2024 North American Cystic Fibrosis Conference (NACFC): Advanced Lung Disease and Lung Transplant Workshop
2023 Advanced Lung Disease and Lung Transplant Program Annual Report
2023 Patient Registry Annual Data Report
Cystic Fibrosis Lung Transplant Consortium
Get Help with CF Foundation Compass
Intestinal Rehab & Transplant Unwrapped Resources
Treatment Options
Adult Indications for Transplant
Patient’s Handbook on Intestinal Transplant (Downloadable)
Transplant Frequently Asked Questions (FAQ)
Pediatric Indications for Transplant
Intestinal Transplant for Kids: A Helpful Guide for Kids Going Through Intestinal Transplant (Downloadable)
Intestinal Transplant for Kids: An Activity Book for Kids (Downloadable)
Part One: Transplant Basics (Video)
Part Two: Transplant Indications (Video)
Introduction to Intestinal and Multivisceral Transplant (Webinar)
Pre-Transplant: An Informational Presentation for Those Considering Intestinal or Multivisceral Transplantation (Webinar)
Pediatric Intestinal Transplant (Webinar)
Growing Up with Intestinal Failure and Getting a Transplant at 10 Years Old: A Conversation with a Mom (Webinar)
Diet and Nutrition for Short Bowl and Intestinal Failure Patients (Webinar)
Home Parenteral Nutrition (HPN) 101 (Webinar)
How Intestinal Transplant has Changed & What the Future Holds (Webinar)
Unwrapping Pain, Palliative Care and Hospice (Webinar)
Coping with Chronic Illness (Webinar)
Centers Near Me
Intestinal Rehabilitation and Transplantation Centers
Patient’s Handbook on Intestinal Transplant (Downloadable)
Caregivers Handbook to Intestinal Transplant: A Guide for Caregivers of Intestinal Transplant Patients (Downloadable)
Referral and Evaluation
Intestinal Transplant Evaluation and The Waitlist
Intestinal Transplant for Kids: A Helpful Guide for Kids Going Through Intestinal Transplant (Downloadable)
Caregivers Handbook to Intestinal Transplant: A Guide for Caregivers of Intestinal Transplant Patients (Downloadable)
Patient’s Handbook on Intestinal Transplant (Downloadable)
Adult Intestinal Transplant First Appointment Checklist and Questions (Downloadable)
Pediatric Intestinal Transplant First Appointment Questions and Checklist (Downloadable)
Intestinal Transplant Evaluation Appointments Table (Downloadable)
Intestinal Transplant Evaluation Tests Table (Downloadable)
Common Laboratory Tests Chart (Downloadable)
Part Three: Transplant Evaluation (Video)
Pre-Transplant: An Informational Presentation for Those Considering Intestinal or Multivisceral Transplantation (Webinar)
Financial Information
Figuring out Costs and Financing Your Care
Caregivers Handbook to Intestinal Transplant: A Guide for Caregivers of Intestinal Transplant Patients (Downloadable)
Financing an Organ Transplant (Webinar)
Getting Listed and Organ Matching
Intestinal Transplant Evaluation and The Waitlist
Transplant Frequently Asked Questions (FAQ)
Organ Donation and Allocation
Caregivers Handbook to Intestinal Transplant: A Guide for Caregivers of Intestinal Transplant Patients (Downloadable)
Patient’s Handbook on Intestinal Transplant (Downloadable)
Intestinal Transplant for Kids: A Helpful Guide for Kids Going Through Intestinal Transplant (Downloadable)
Preparing for Your Child's Wait, Transplant, and Hospital Stay (Downloadable)
Part Four: The Transplant Waitlist and The Call (Video)
Pre-transplant: An Informational Presentation for Those Considering Intestinal or Multivisceral Transplantation (Webinar)
Care Before Transplant
Preparing for Your Child's Wait, Transplant, and Hospital Stay (Downloadable)
Receiving a Transplant
Adult: The Call and Transplant
Pediatric: The Call and Transplant
Transplant Frequently Asked Questions (FAQ)
Intestinal Transplant for Kids: A Helpful Guide for Kids Going Through Intestinal Transplant (Downloadable)
Patient’s Handbook on Intestinal Transplant (Downloadable)
Caregivers Handbook to Intestinal Transplant: A Guide for Caregivers of Intestinal Transplant Patients (Downloadable)
Hospital Tips (Downloadable)
Preparing Your Child for Surgery (Downloadable)
A Kid's Hospital Packing List (Downloadable)
Part Five: The Surgery and Recovery (Video)
The Surgery and Post-Transplant Complications: Information for Patients and Caregivers (Webinar)
Care After Transplant
Adults: The Call and Transplant Surgery Stay
Life After Transplant for Adults
Adult Post-Transplant Responsibilities
Pediatric Post-Transplant Life and Responsibilities
Post-Transplant Medications
Immunosuppression Medications Chart (Downloadable)
A Parent and Caregiver's Guide to Medications (Downloadable)
Post-Transplant Complications
Transplant Frequently Asked Questions (FAQ)
Intestinal Transplant for Kids: A Helpful Guide for Kids Going Through Intestinal Transplant (Downloadable)
Patient’s Handbook on Intestinal Transplant (Downloadable)
Caregivers Handbook to Intestinal Transplant: A Guide for Caregivers of Intestinal Transplant Patients (Downloadable)
Infection Prevention: A Guide for Immunosuppressed Patients and Their Families (Downloadable)
Coping with Chronic Illness: A Guide for Patients and their Loved Ones (Downloadable)
Tips for Eating after Intestinal Transplant (Downloadable)
Deciding on the Type of Ostomy Appliance System (Downloadable)
Input and Output Log (Downloadable)
Part Six: Complications and Medications (Video)
Part Seven: Transplant Discharge (Video)
Part Eight: Transplant Advice (Video)
Part Nine: Life After Transplant (Video)
Post Transplant Infection: Diagnosis & Management (Webinar)
Post-Transplant Medications: Information for Patients and Caregivers (Webinar)
Post-Transplant Care and Follow-Up: Information for Patients and Caregivers (Webinar)
Coping with Chronic Illness (Webinar)
New Insights upon Rejection after Small Bowel Transplantation (Webinar)
Community and Staying Connected
Virtual Support Group
Virtual Caregivers Support Group
Community Perspective Stories
Patient Stories
Reflection Videos
Additional Information
Gastrointestinal, Transplant, and Related Medical Terms
Helpful Patient Websites
Helpful Pediatric Websites
Intestinal Transplant for Kids: An Activity Book for Kids (Downloadable)
Educating the Intestinal Transplant Patient: A Guide for Teachers and Other School Members (Downloadable)
Your Friend Had an Intestinal Transplant: A Guide for Those Supporting Others (Downloadable)
Hospital Diets in Intestinal Transplant (Downloadable)
4 Things Not to Say to Someone with Chronic Illness (Downloadable)
National Kidney Foundation Resources
Treatment Options
Choosing A Treatment For Kidney Failure
First Steps to Transplant: Introduction to Kidney Transplant (course)
Getting a Kidney Transplant
20 Common Questions about Kidney Transplant
Treatment and Support
How Does Palliative Care Improve the Quality of Life for Kidney Patients?
Getting a Living Donor Kidney Transplant
Finding a Living Donor (course)
Hemodialysis
Home Dialysis
Peritoneal Dialysis
Stopping or not Starting Dialysis
Centers Near Me
How to Choose a Transplant Center
Referral and Evaluation
Evaluation for Kidney Transplant
First Steps to Transplant: Considering a Kidney Transplant (course)
The Transplant Evaluation
Getting Approved for Transplant Waitlist
Why Someone May Not Be Approved
Cost and Paying for a Transplant
Getting Listed
The Kidney Transplant Waitlist
First Steps to Transplant: Getting Listed for Kidney Transplant (course)
Multiple Listing for Kidney Transplant
Care Before Transplant
Treatment and Support
Staying Healthy While Waiting for a Kidney
20 Common Questions about Kidney Transplant
Care After Transplant
After Transplant (course)
After Transplant: Transplant Surgery & Recovery (course)
Life with a Kidney Transplant
Managing Your Health Post-Transplant
20 Common Questions about Kidney Transplant
Questions or Need Assistance?
NKF Peers
National Kidney Foundation: Living Kidney Donor Resources
Starting the Process of Living Kidney Donation
Becoming a Living Donor
Becoming a Living Donor (course)
How to Donate a Kidney
Understanding Living Organ Donation
Living Donor Surgery and Risks
Living Kidney Donor Evaluation
Living Donor Evaluation
Becoming a Living Donor: Living Donor Evaluation (course)
Getting Listed
First Steps to Transplant: Getting Listed for Kidney Transplant (course)
Care After Living Kidney Donation
Questions or Need Assistance?
NKF Peers
