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
Deciding to Get Listed for a Lung Transplant
Lung Transplant Today
Talking About 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
Lung Transplant Referral for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Consensus Guidelines
What If You Aren’t Eligible for a Lung Transplant?
Financial Support
Planning to Pay for a Transplant
Care Before Transplant
Models of Palliative Care Delivery for Individuals with Cystic Fibrosis
What to Do While Waiting for a Transplant: Maintaining Your Health and More
Receiving a Transplant
Lung Transplant Surgery and Recovery
Care After Transplant
Caring for Your New Lungs
Collaborating Complex Care Needs for Cystic Fibrosis Lung Transplant Recipients
Coping After Recovery
Life After a Lung Transplant
Models of Palliative Care Delivery for Individuals with Cystic Fibrosis
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
Questions or Need Assistance?
Get Help with CF Foundation Compass
Intestinal Rehab & Transplant Unwrapped Resources
Treatment Options
Adult Indications for Transplant
Adult Intestinal Rehabilitation
Pediatric Indications for Transplant
Pediatric Intestinal Rehabilitation, Diet and Hydration
Intestinal Transplant for Kids: An Activity Book for Kids (Downloadable)
Intestinal Transplant for Kids: A Helpful Guide for Kids Going Through Intestinal Transplant (Downloadable)
Deciding on the Type of Ostomy Appliance System (Downloadable)
Patient’s Handbook on Intestinal Transplant (Downloadable)
Transplant Frequently Asked Questions (FAQ)
Part One: Transplant Basics (Video)
Part Two: Transplant Indications (Video)
Coping with Chronic Illness (Webinar)
Diet and Nutrition for Short Bowl and Intestinal Failure Patients (Webinar)
Growing Up with Intestinal Failure and Getting a Transplant at 10 Years Old: A Conversation with a Mom (Webinar)
Home Parenteral Nutrition (HPN) 101 (Webinar)
How Intestinal Failure Treatment has Changed & What the Future Holds (Webinar)
Introduction to Intestinal and Multivisceral Transplant: An Informational Presentation for Those Considering Intestinal or Multivisceral Transplantation (Webinar)
Living with an Ostomy (Webinar)
Pediatric Intestinal Transplant (Webinar)
Pre-Transplant: An Informational Presentation for Those Considering Intestinal or Multivisceral Transplantation (Webinar)
Short Bowel Syndrome and Intestinal Rehabilitation: Information for Patients and Caregivers (Webinar)
Unwrapping Pain, Palliative Care and Hospice (Webinar)
Centers Near Me
Caregivers Handbook to Intestinal Transplant: A Guide for Caregivers of Intestinal Transplant Patients (Downloadable)
Intestinal Rehabilitation and Transplantation Centers
Patient’s Handbook on Intestinal Transplant (Downloadable)
Part One: Transplant Basics (Video)
Referral and Evaluation
Adult Intestinal Transplant First Appointment Checklist and Questions (Downloadable)
Intestinal Transplant for Kids: A Helpful Guide for Kids Going Through Intestinal Transplant (Downloadable)
Pediatric Intestinal Transplant First Appointment Questions and Checklist (Downloadable)
Caregivers Handbook to Intestinal Transplant: A Guide for Caregivers of Intestinal Transplant Patients (Downloadable)
Common Laboratory Tests Chart (Downloadable)
Intestinal Transplant Evaluation Appointments Table (Downloadable)
Intestinal Transplant Evaluation Tests Table (Downloadable)
Intestinal Transplant Evaluation and The Waitlist
Patient’s Handbook on Intestinal Transplant (Downloadable)
Part Three: Transplant Evaluation (Video)
Introduction to Intestinal and Multivisceral Transplant: An Informational Presentation for Those Considering Intestinal or Multivisceral Transplantation (Webinar)
Pre-Transplant: An Informational Presentation for Those Considering Intestinal or Multivisceral Transplantation (Webinar)
Financial Information
Caregivers Handbook to Intestinal Transplant: A Guide for Caregivers of Intestinal Transplant Patients (Downloadable)
Figuring out Costs and Financing Your Care
Financing an Organ Transplant (Webinar)
Getting Listed and Organ Matching
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)
Caregivers Handbook to Intestinal Transplant: A Guide for Caregivers of Intestinal Transplant Patients (Downloadable)
Intestinal Transplant Evaluation and The Waitlist
Organ Donation and Allocation
Patient’s Handbook on Intestinal Transplant (Downloadable)
Transplant Frequently Asked Questions (FAQ)
Part Four: The Transplant Waitlist and The Call (Video)
Pediatric Intestinal Transplant (Webinar)
Pre-transplant: An Informational Presentation for Those Considering Intestinal or Multivisceral Transplantation (Webinar)
Care Before Transplant
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)
A Parent and Caregiver's Guide to Medications (Downloadable)
Caregivers Handbook to Intestinal Transplant: A Guide for Caregivers of Intestinal Transplant Patients (Downloadable)
Coping with Chronic Illness: A Guide for Patients and their Loved Ones (Downloadable)
Hospital Diets in Intestinal Transplant
Hospital Tips
Patient’s Handbook on Intestinal Transplant (Downloadable)
Coping with Chronic Illness (Webinar)
Unwrapping Pain, Palliative Care and Hospice (Webinar)
Virtual Support Group
Virtual Caregivers Support Group
Receiving a Transplant
Adult: The Call and Transplant Surgery Stay
A Kid's Hospital Packing List (Downloadable)
Intestinal Transplant for Kids: A Helpful Guide for Kids Going Through Intestinal Transplant (Downloadable)
Pediatric: The Call and Transplant
Preparing Your Child for Surgery (Downloadable)
Caregivers Handbook to Intestinal Transplant: A Guide for Caregivers of Intestinal Transplant Patients (Downloadable)
Hospital Tips (Downloadable)
Patient’s Handbook on Intestinal Transplant (Downloadable)
Transplant Frequently Asked Questions (FAQ)
Part Four: The Transplant Waitlist and The Call (Video)
Part Five: The Surgery and Recovery (Video)
The Surgery and Post-Transplant Complications: Information for Patients and Caregivers (Webinar)
Adults: The Call and Transplant Surgery Stay
Adult Post-Transplant Responsibilities
Life After Transplant for Adults
Intestinal Transplant for Kids: A Helpful Guide for Kids Going Through Intestinal Transplant (Downloadable)
Pediatric: The Call and Transplant
Pediatric Post-Transplant Life and Responsibilities
Caregivers Handbook to Intestinal Transplant: A Guide for Caregivers of Intestinal Transplant Patients (Downloadable)
Coping with Chronic Illness: A Guide for Patients and their Loved Ones (Downloadable)
Deciding on the Type of Ostomy Appliance System (Downloadable)
Immunosuppression Medications Chart (Downloadable)
Infection Prevention: A Guide for Immunosuppressed Patients and Their Families (Downloadable)
Input and Output Log (Downloadable)
Patient’s Handbook on Intestinal Transplant (Downloadable)
A Parent and Caregiver's Guide to Medications (Downloadable)
Post-Transplant Complications
Post-Transplant Medications
Tips for Eating after Intestinal Transplant (Downloadable)
Transplant Frequently Asked Questions (FAQ)
Part Five: The Surgery and Recovery (Video)
Part Six: Complications and Medications (Video)
Part Seven: Transplant Discharge (Video)
Part Eight: Transplant Advice (Video)
Part Nine: Life After Transplant (Video)
Coping with Chronic Illness (Webinar)
Introduction to Intestinal and Multivisceral Transplant: An Informational Presentation for Those Considering Intestinal or Multivisceral Transplantation (Webinar)
Labs: The Good, The Bad, The Ugly (Webinar)
Life After Intestinal and Multivisceral Transplant: Information for Post-Transplant Patient and Caregivers (Webinar)
Living with an Ostomy (Webinar)
New Insights upon Rejection after Small Bowel Transplantation (Webinar)
Post-Transplant Care and Follow-Up: Information for Patients and Caregivers (Webinar)
Post Transplant Infection: Diagnosis & Management (Webinar)
Post-Transplant Medications: Information for Patients and Caregivers (Webinar)
The Surgery and Post-Transplant Complications: Information for Patients and Caregivers (Webinar)
Unwrapping Pain, Palliative Care and Hospice (Webinar)
Virtual Support Group
Virtual Caregivers Support Group
Community and Staying Connected
Community Perspective Stories
Patient Stories
Reflection Videos
Virtual Support Group
Virtual Caregivers Support Group
Organ Donation
Adult Post-Transplant Responsibilities
Organ Donation and Allocation
Patient's Handbook on Intestinal Transplant (Downloadable)
Transplant Frequently Asked Questions (FAQ)
How Two Lives Intersected - A Candid Conversation (Webinar)
Post-Transplant Care and Follow-Up: Information for Patients and Caregivers (Webinar)
Survivor's Guilt and Corresponding with Donor Families: Harnessing Guilt and Grief (Webinar)
Unwrapping Organ Donation (Webinar)
Additional Information
Helpful Pediatric Websites
Helpful Patient Websites
Educating the Intestinal Transplant Patient: A Guide for Teachers and Other School Members (Downloadable)
Gastrointestinal, Transplant, and Related Medical Terms
Hospital Diets in Intestinal Transplant (Downloadable)
Intestinal Transplant for Kids: An Activity Book for Kids (Downloadable)
Video Library
Your Friend Had an Intestinal Transplant: A Guide for Those Supporting Others (Downloadable)
4 Things Not to Say to Someone with Chronic Illness (Downloadable)
The Ins and Outs of Being a Transplant Caregiver: Information for Caregivers of Transplant Patients (Webinar)
Making the Transition: Weaning Off Parenteral and Enteral Nutrition (Webinar)
Unwrapping Motility (Webinar)
Unwrapping Short Bowel Syndrome (Webinar)
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
How Does Palliative Care Improve the Quality of Life for Kidney Patients?
Treatment and Support
20 Common Questions about Kidney Transplant
Finding a Living Donor (course)
Getting a Living Donor Kidney Transplant
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)
Getting Approved for Transplant Waitlist
The Transplant Evaluation
Why Someone May Not Be Approved
Financial Information
Cost and Paying for a Transplant
Getting Listed
First Steps to Transplant: Getting Listed for Kidney Transplant (course)
The Kidney Transplant Waitlist
Multiple Listing for Kidney Transplant
Care Before Transplant
Staying Healthy While Waiting for a Kidney
Treatment and Support
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
Living Donor Surgery and Risks
Understanding Living Organ Donation
Living Kidney Donor Evaluation
Becoming a Living Donor: Living Donor Evaluation (course)
Living Donor Evaluation
Getting Listed
First Steps to Transplant: Getting Listed for Kidney Transplant (course)
Care After Living Kidney Donation
Questions or Need Assistance?
NKF Peers
