Giving you back your tomorrow

Highway of Hope helps patients with rare diseases find resources, assistance, and support.

Highway of Hope Family Love and Support- rare disease support- children syndromes

When diagnosed with a rare disease, the first feeling most people have is that of overwhelming, all-consuming loneliness.

When diagnosed with a rare disease, the first feeling most people have is that of overwhelming, all-consuming loneliness.

There are so many emotions, so many questions.

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What can I expect from this disease?

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What does this mean for my future?

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Will I ever lead a normal life?

And there are just so, so many things you need to navigate.

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How do I find the right doctor?

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Should I go for a second opinion?

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What treatment options are available?

Highway of Hope was created to mitigate some of the despair, the overwhelm, the loneliness.

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If you have a rare disease, we are your middleman.

We connect patients with the medical, financial, and emotional support they need.

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Access to clinical trials

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Personalized doctor referrals

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Collaboration with doctors

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Access to financial grants

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Patient advocacy

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Job placement

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1:1 mentoring

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Transportation

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Because there is HOPE.
There is a TOMORROW.

Highway of Hope rare disease support- rare disease in children- Visually impaired girl with cane

Because there is HOPE.
There is a TOMORROW.

You don’t have to fight this alone.

Highway of Hope is on your journey together with you.

Patients served

States serviced

1:1 mentors

Connected Doctors

Rare diseases serviced

You don’t have to fight this alone.

Highway of Hope is on your journey together with you.

Patients served

States serviced

1:1 mentors

Connected Doctors

Rare diseases serviced

How it works

in three simple steps

1

Reach out

2

We’ll connect you with a dedicated Case Manager

3

Your Case Manager will take over and connect you with the support and care you need

You tell us what you need, we make the connections.

At Highway of Hope, you are not your condition. You are a unique individual with unique needs — and we strive to give you support tailored to your situation.

Highway of Hope rare disease support- pediatric rare diseases- Father with son with limited mobility

Mike needed an expert doctor but had limited mobility

— we squeezed him in with a top doctor and arranged transportation.

Highway of Hope rare disease support- children syndromes- girl with heart, medical

Sara wanted her daughter to join a clinical trial, but she didn’t qualify

— we worked directly with the researchers so she could participate.

Highway of Hope rare disease support- rare medical conditions- father with sick son

Josh wanted to get scientists to research a new treatment option, but didn’t know where to start

— we got a University on board, secured a grant, and got the research going.

Real people, real stories

“HOH showed us that they truly care and understand”

My introduction to HOH was very unique in that I met Yehuda, the founder, shortly before passing out as a result of a Dysautonomia episode at an RDLA conference. Though we had met no more than 1 hour before, he met me at the hospital, stayed by my side and helped advocate for my medical needs at a time when I was unable to do so. HOH showed us that they truly care and understand the unique circumstances of those in the rare community.

Deborah Vick

Dysautonomia

“Highway of Hope brings a unique approach to people braving rare diseases”

Highway of Hope brings a unique approach and perspective to people braving rare diseases.Their organization empowers those living with rare conditions to become leaders — to break free of a disabled mindset and use their experiences to teach others.

S.D.S.

Small Fiber Neuropathy

“Highway of Hope is an absolute force for patient advocacy”

Highway of Hope — and specifically it’s founder Yehuda Gelman — is an absolute force for patient advocacy. HOH recognizes that patients are more than their illnesses and strives to help them achieve as much ‘normalcy’ as possible. HOH also creates connections between patients and always uplifts and empowers patients like myself to become their own best advocates.

Shira Strongin

Rare Disease Patient

If you have a rare disease, you’re a fighter.

But even fighters don’t have to fight alone.

We’re here to connect you to mentors, doctors, or legislators so you get to live life to its absolute fullest.

Clicking this button will help you leave loneliness behind and embrace hope. We’re here — and we want to help you.

All you have to do is reach out.