The Million Dollar Bike Ride for Orphan Disease Research

The Million Dollar Bike Ride for Orphan Disease Research Join us on Saturday, June 8, 2024 on the UPenn Campus in Philadelphia to raise money 4 Rare Disease!

Today is the final day to guarantee your jersey and t-shirt size.If you register by tonight, you’re locked in for the si...
04/09/2026

Today is the final day to guarantee your jersey and t-shirt size.

If you register by tonight, you’re locked in for the size you want. After today we can’t promise your specific size will be available at packet pickup since we'll be moving to first come first served.

Register today! bit.ly/MDBR2026

🚫 NO JOKES, JUST GOOD NEWS!Tomorrow might be April Fools’ Day, but this extension is 100% REAL.We know the April 1st dea...
03/31/2026

🚫 NO JOKES, JUST GOOD NEWS!

Tomorrow might be April Fools’ Day, but this extension is 100% REAL.

We know the April 1st deadline was creeping up, so we’re giving you a "prank-free" grace period! We’ve officially moved the registration price increase to April 8th.

You have one extra week to lock in the $65 early bird rate before it jumps to $85. Secure your spot today!

🚴 Register for real here: bit.ly/MDBR2026

🚴‍♀️ATTENTION MDBR RIDERS!Registration prices for the Million Dollar Bike Ride are going UP on April 1st!Lock in your sp...
03/12/2026

🚴‍♀️ATTENTION MDBR RIDERS!
Registration prices for the Million Dollar Bike Ride are going UP on April 1st!

Lock in your spot at the current price of $65 before the non-fundraising option increases to $85.

Save money and show up on June 13th to support your rare disease team! 🧬💙
Register NOW at bit.ly/MDBR2026

02/28/2026

Rare Disease Day is about more than just awareness, it’s about action and education. At the Orphan Disease Center, we are dedicated to bridging the gap between diagnosis and discovery for the 1 in 10 individuals living with a rare disease.

We’ve shared this video to help explain the impact of orphan diseases and why our mission to fund transformative research is more urgent than ever. Join us in honoring the rare community today.

Pedal for a purpose! 🚲✨Celebrate Rare Disease Day with 20% off your MDBR registration—today only! 🛑Every mile and every ...
02/28/2026

Pedal for a purpose! 🚲✨
Celebrate Rare Disease Day with 20% off your MDBR registration—today only! 🛑

Every mile and every dollar accelerates rare disease research. 🧬

Lock in your spot before midnight and let’s make a massive impact together. ⚡

🔗 Use Code RDD2026 at checkout to claim your 20% registration fee

Register today! Bit.ly/MDBR2026

Pedal for a purpose! 🚲✨Celebrate Rare Disease Day with 20% off your MDBR registration—today only! 🛑Every mile and every ...
02/28/2026

Pedal for a purpose! 🚲✨
Celebrate Rare Disease Day with 20% off your MDBR registration—today only! 🛑

Every mile and every dollar accelerates rare disease research. 🧬

Lock in your spot before midnight and let’s make a massive impact together. ⚡

🔗 Use Code RDD2026 at checkout to claim your 20% registration

Rare diseases aren't actually that rare. With over 7,000 known conditions, they affect 1 in 10 people—our neighbors, our...
02/28/2026

Rare diseases aren't actually that rare. With over 7,000 known conditions, they affect 1 in 10 people—our neighbors, our friends, and our families.

At the Orphan Disease Center, we honor by turning awareness into action. We believe that no disease is too rare to merit a fight, and no patient should have to navigate their journey alone. Today, we wear our stripes for the millions of stories that deserve to be heard.

Join us in showing support! 🦓 💖 💚 💙 💜

John Giovinco is a Genetic Counseling Assistant at Children's Hospital of Philadelphia. He mainly supports the Genetic C...
02/27/2026

John Giovinco is a Genetic Counseling Assistant at Children's Hospital of Philadelphia. He mainly supports the Genetic Counselors in inpatient services, as well as with the Metabolism department. These include Lysosomal Storage Disorders (LSDs) such as Pompe, Gaucher, and Fabry disease. During the GCSX Advocacy Internship, he will be working with the ZTTK-SON Shine Foundation to create an online blog that will help patients and parents interpret genetic testing results, and introduce them to genetic counseling. He will also create informative materials for providers who may be unfamiliar with the syndrome to help improve care.

Anastasia works at CHOP as a Genetic Counseling Assistant within the Mitochondrial Medicine Frontier program, the Cornel...
02/27/2026

Anastasia works at CHOP as a Genetic Counseling Assistant within the Mitochondrial Medicine Frontier program, the Cornelia de Lange Syndrome (CdLS) clinic, and Clinical Genetics. Prior to CHOP, she studied Genomic Medicine at Temple University's College of Science & Technology while competing on their NCAA D1 Women's Fencing team. She is excited to support the data analysis efforts of The Rory Belle Foundation to better understand genotype-phenotype complexity in the NARS1 gene. By working with RARE-X data, she will also be identifying connections between de novo NARS1 variants and patient-reported phenotypes.

Maddie Buck is an aspiring genetic counselor currently working as a genetic counseling assistant with CHOP’s Mitochondri...
02/27/2026

Maddie Buck is an aspiring genetic counselor currently working as a genetic counseling assistant with CHOP’s Mitochondrial Medicine Program. She is very passionate about non-profit leadership and community-building, utilizing her clinical background and gregarious personality to serve as a dedicated voice for patients who face barriers to advocating for themselves. In her free time, she enjoys outdoor activities, reading, and participating in spin and yoga classes.

During her advocacy internship with the Shwachman-Diamond Syndrome (SDS) Alliance, she will be developing a comprehensive digital resource center and "First 48 Hours" toolkit designed to translate complex medical data into accessible, actionable guidance for newly diagnosed families. This will focus on empowering patient advocacy through user-friendly design, creating everything from provider education letters to psychosocial support tools that bridge the gap between clinical diagnosis and community connection.

Prishna is currently a Genetic Counseling Assistant at the Children’s Hospital of Philadelphia. She is working alongside...
02/27/2026

Prishna is currently a Genetic Counseling Assistant at the Children’s Hospital of Philadelphia. She is working alongside the GIGYF1 Foundation to de-mystify scientific literature for families interested in learning more about GIGYF1-related syndrome and aims to contribute to research development at the GIGYF1 Foundation.
Originally from Palmdale, California, Prishna is an Eagles convert (GO BIRDS!) and has come to appreciate the liveliness and opportunity in Philly. In her free time, Prishna enjoys experimental baking, all sorts of DIY projects, and dancing.

Rency Dhaduk is a Genetic Counseling Assistant at CHOP’s Epilepsy and Neurodevelopmental Disorders. As the GCSX intern, ...
02/26/2026

Rency Dhaduk is a Genetic Counseling Assistant at CHOP’s Epilepsy and Neurodevelopmental Disorders. As the GCSX intern, she will support the development of a comprehensive recruitment guide for individuals with Bloom syndrome by assisting with data collection, analysis, and outreach to key medical and genetic partners, with the goal of expanding participation in the International Bloom Syndrome Registry (IBSR).

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