Prader - Willi Syndrome
might just be a long word you don’t know how to pronounce.
But for millions of people, it’s LIFE.
You hear about a rare condition — SMA, FFP, or hydrocephalus.
“That’s too bad,” you think,
“I feel sorry for those people.”
And then, you head on with your day.
But if it was you — or your loved one — that had one of these conditions, you wouldn’t head on with your day … because your day would look nothing like it looks right now.
A rare disease is not just a string of letters.
A rare condition means:
Seeing your child wasting away … and knowing that with every tick of the clock, their time is running out…
Taking your loved one in for yet another brain surgery … the 4th one in a span of three weeks…
If it was YOUR child or loved one affected, would you want people to visit this page, give a sigh, and … leave?
Or would you be silently screaming, “Time is short, money can mean life, do whatever you can to help us!”
Your donation isn’t measured in dollars. It’s measured in HOPE.
Here’s what your donation becomes…
One-on-One Mentors
Having a rare disease is incredibly, painfully lonely. Your donation allows us to pair newly-diagnosed patients with mentors who understand and care.
Doctor Referrals
Because rare conditions are rare, pharmaceuticals don’t want to develop treatments. With your donation, Highway of Hope can help patients access cutting-edge research and clinical trials.
Legislation
The rare disease community is often overlooked by lawmakers. With your support, we fight for our patients in Washington so they receive the financial and medical assistance they need.
Transportation
About half of those affected with rare conditions struggle with mobility. Your support allows us to provide free transportation to doctor’s appointments, hospitals, and therapy centers.
Those with rare diseases are heroes.
They face fear with courage
They face loneliness with empathy
They face hardship with willpower
Don’t leave this page and go on with your life.
