Searching for answers when your child is suffering from a rare or undiagnosed condition can be frustrating.  We have organized the information from various websites in an easy-to-find way.  While CC4C cannot endorse or guarantee any of these resources, many of our families have found these sites to be useful.

Nationwide Organizations

Center for Genetic and Rare Diseases via National Institutes of Health

www.rarediseases.info.NIH.gov

This website for the NIH has links for suspected genetic disorders, tips for the undiagnosed, pages with financial aid, patient advocacy groups, travel and lodging assistance, and all the funded clinical studies in the world that are looking for participants with symptoms to be studied.

Search for trials at www.clinicaltrials.gov or call the Genetic and Rare Disease Call Center line at 1-888-205-2311

National Organization for Rare Disorders

 www.rarediseases.org or call at 800-999-NORD

NORD has Medication Assistance programs to help pay for medications that may not be covered by insurance, disease specific assistance programs if you already have a diagnosis, travel and lodging assistance for study participants, and a staff of information specialist to answer questions about resources, clinical trials and more.

Rare Genomics Institute

 http://raregenomics.org/

RGI does genome sequencing and analysis of patient genomes.  They do not charge for qualifying patient participants.

SeriousFun Camps

 https://www.seriousfunnetwork.org/home

At CC4C we know that your child is more than their condition, so we’ve included a link to Serious Fun Camps.  These camps were founded by Paul Newman to be a fun place where children with serious illnesses can connect with others like themselves in medically safe environments. There are 30 camps around the country and world.

Travel Assistance Programs

You’ve found the ideal program and doctor for your child, but it’s in another state.  How do you get your child to the treatment they need?   Below are some organizations that help qualified patients get to treatment.

National Patient Travel Center

 http://www.patienttravel.org/ or call 1-800-296-1217

Provides information about all forms of charitable, long-distance medical transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network to ensure that no financially-needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical transportation.

Mercy Medical Airlift

 http://mercymedical.org/

Affiliated with National Patient Travel Center but can occasionally help a wider range of patients.

Air Care Alliance

 http://www.aircareall.org/listings.htm

A listing of organizations with volunteers flying to help others.  Some of the listed sites are only regional, while some are nation and even worldwide. 

Healthcare Hospitality Network, Inc

http://www.nahhh.org/

Provides lodging and support services to patients, families and their loved ones who are receiving medical treatment far from home. 

Ronald McDonald House Charities

http://www.rmhc.org

RMHC helps families stay together during treatment by finding housing that’s near a hospitalized child.  They have 290 chapters in 58 countries and regions.

The Essential Guide to Traveling with a Medical Condition

http://www.insurancewith.com/travelling-with-a-medical-condition/

Airports and Special Needs Travel: A Complete Guide

http://www.friendshipcircle.org/blog/2012/05/03/airports-and-special-needs-travel-a-complete-guide/

Specific Pages We Found Helpful

NORD’S PATIENT ASSISTANCE PROGRAMS

http://www.rarediseases.org/patients-and-families/patient-assistance

This page has several assistance programs which should your child qualify could be useful.

  • The Medication Assistance Programs page contains a list of specific medications that might be otherwise unaffordable without help from the program.
  • The Disease Specific Assistance Programs are designed to help patients with out-of-pocket cost associated with specific diseases, including premiums, deductibles, and sometimes travel cost, infusions, and diagnostic testing. A list of specific diseases is included on the site.
  • The Travel and Lodging Assistance for Study Participants assists patients who are participation in clinical trials with travel and lodging costs incurred during visits to the study sites and provides a list of specific diseases currently in trial.

NORD’S NEWS ABOUT CLINICAL TRIALS

http://www.rarediseases.org/patients-and-families/clinical-trials

NORD provides information about opportunities to participate in clinical trials so that patients and their physicians may decide whether specific studies are appropriate for them.