When you’re just not sure where to go, we give you your next steps
Highway of Hope connects you to whomever YOU need to connect to – whether that’s a mentor, doctor, or legislator.
If you…
Want to try an experimental drug … but don’t know any doctor that offers it
Crave to connect to someone who’s been there, done that … but don’t know anyone who fits the bill
Need someone to advocate with the hospital on your behalf … but don’t know where to turn
…You’ve come to the right place.
If you…
Want to try an experimental drug … but don’t know any doctor that offers it
Crave to connect to someone who’s been there, done that … but don’t know anyone who fits the bill
Need someone to advocate with the hospital on your behalf … but don’t know where to turn
…You’ve come to the right place.
You reach out, we step in.
It’s that simple.
We’ve helped over
patients with rare diseases —
and we’re here to help you too
I want to …
(Click on each service to get more info)
Medical Support
Find the right doctor
Have someone advocate for me
Get answers to my medical questions
Legislation / Research
Have scientists research an experimental drug
Understand whether I’m a good fit for a clinical trial
Secure funding for a clinical trial
Emotional Support
Connect with someone who can support me
Give support to others
If you’re ready to give back to the rare disease community, we need you! We’ll secure speaking gigs so you can share your experience, or hook you up 1:1 with someone at the beginning of their journey.
Other
Get wheelchair-friendly transportation to doctor’s appointments
Find a job in which I can do meaningful work
We hook up hundreds of individuals with rare diseases with employers who are hiring. You tell us what kind of job you’re looking for, we’ll get on it — and do our very best to help you get it.
Bottom line: We care … and we make things happen
Some recent accomplishments … and current projects
Assisted with a multi-state bone marrow drive, resulting in thousands of new registrants and over 90 transplants.
Helped raise awareness and funding to start 5 clinical research studies for neurological and musculoskeletal conditions.
Currently working with the FDA to get a few new and innovative drugs approved.
Advocated for the Cures Act, which got signed into law in 2016. The Cures Act is designed to help accelerate medical product development to bring new innovations and advances to patients.
Secured discounts for patients who needed costly medications by working directly with the manufacturer and advocacy organizations.
“Some families experience hope for the first time”
Having a child with a disability, let alone a rare condition, can be devastating for a family. Having a place to go and people to speak to who can provide hope and guidance is a blessing! Highway of Hope is truly a place where some families experience hope for the first time.
“Highway of Hope guides us and give us confidence”
“When it came to assistive devices for our 3 year old son (with CP), Highway of Hope was there to guide us with a wealth of resources and knowledge. We were very impressed when they followed up with us and helped continue researching the right device. We’re continually in contact with them — they guide us and give us the confidence that we are doing the best for our son.”
“Highway of Hope educates, advocates for, and supports individuals along their journey”
Highway of Hope is literally just that — a highway of hope. When individuals are faced with an injury or an illness, they often do not know which paths are available to them. Highway of Hope takes the patient (and their family) “by the hand”, educates them on the possible paths ahead, and advocates and supports them along their journey towards greater independence, improved quality of life, and better health and function.
There’s no reason to navigate it all on your own.
There are people who’ve been where you are.
There are people who know what it’s like.
And there are people who want to give you the practical assistance + emotional support you need.
Reach out, we’re here for you.