Going the Extra Mile for Rare Disease Patients

Going the Extra Mile for Rare Disease Patients 

We are Honeycomb Health , a start-up working to empower every patient suffering from a rare disease by providing them with the ability to securely store, access, and share their health information, all for free. We also raise funds for research via co-branded online storefronts, supporting any and every rare disease advocacy group that seeks our help.

This summer, 2021, on the road with rare 

Rebecca Trahan is a rare disease patient (a SCAD survivor) and design rock star. For the past 10 years, she has been on a mission to support fellow survivors and make all women aware that heart attack is their #1 health risk. Now, she’s hitting the road. 

Rebecca’s cross-country road trip will help raise $3 Million for Honeycomb, dramatically improving the lives of SCAD survivors and rare disease patients everywhere. North to south, east to west. She'll travel for up to 6 months, driving over 10,000 miles to network with every group of rare and ultra-rare disease patients, and meet all of them in however many cities, towns, or neighborhoods they find themselves in. It’s going to be Kerouac meets mad fun, online and offline, and you can be a part of it.

Why is it so important? Approximately 400 million people live with rare diseases all around the world. Each patient is an individual, defined not by their condition, but by the grace and resilience with which they meet it. United with loved ones, rare disease patients manage their own care, every day, in every country, city, and neighborhood you can imagine. They are strong, and they can use our help.

Because a single rare disease affects comparatively few people, the courses of action for recovery or treatment are typically unknown—even to most doctors. This forces patients to search for specialists who can take the time to understand their needs, or find ways to spur the necessary research themselves.

This is the world that rare disease patients live in. Manually managing endless medical data from different doctors, tracking test results in 15lb binders, and building support where they can. They end up constantly having to justify and record their own diagnostic tests, advocating for themselves in ways patients of more researched diseases rarely, if ever, consider.

Honeycomb Health aims to change that, and we need your help.

Imagine a world where every chart, every reading, and every piece of data that describes how a rare disease affects a patient’s life could be stored. All in one place, in perpetuity, for free. Imagine rare disease patients being able to network with one another in real time. Imagine communicating with healthcare professionals, or passing down records of your health and genetic histories to your children, and their children. That is the world we and Rebecca are working to realize.
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Will you help her help others?

Your donation will help close out phase one by supporting user testing, user experience designs, and development costs for our SCAD Alliance  partnership—as well as provide needed funding for research via our free online storefronts.

Everything you give will be 100% tax deductible, and every dollar you contribute will go directly to rare disease patient support.

It would mean so much, both to us at Honeycomb and to the many underserved patients of rare and ultra-rare diseases.  Thank you!

Sincerely,

The Team at Honeycomb Health
www.honeycombhealth.com
Honeycombhealth.store 

Honeycomb Health is a part of GTO Greater Good, a Certified 501(c)(3) Nonprofit created to provide sustainable and impactful programs for people around the globe.

  • Elizabeth Izard Apelles 
    • $50 
    • 1 mo
  • Jill Whitten 
    • $200 
    • 1 mo
  • Jolie Shay 
    • $100 
    • 2 mos
  • Barrie Cullinan 
    • $100 
    • 2 mos
  • Jeanne Kovalski 
    • $25 
    • 2 mos
See all

Fundraising team: Equipo de recaudación de fondos (2)

Elizabeth Izard Apelles, CEO, Greater Than One Group 
Organizer
Raised $200 from 2 donations
New York, NY
Rebecca Trahan 
Team member
Raised $575 from 6 donations
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