Rob Long

Spend a day in San Diego with our Executive Director, @RobLong47, as he shares his journey—from patient to advocate—and speaks up for the 30 million Americans living with a rare disease. Behind every data point is a person, a family, and a story. And together, #WeTackleRare.

𝙏𝙖𝙠𝙚 𝙖 𝙨𝙥𝙞𝙣 𝙬𝙞𝙩𝙝 𝙌𝙪𝙞𝙣𝙣! @quinnpeters_ set out on campus for the first day of classes to make sure @monmouthu students got where they needed to be! #FlyHawks

With support of Uplifting Athletes advocate and Bears OL Ryan Bates, #DaBears hosted the Boychuck family today. Their toddler, has the rare genetic condition MED13L, affecting his motor skills. Uplifting Athletes is proud to help raise awareness for rare diseases alongside the Boychucks.

Go Birds

Imagine you’re getting ready to be drafted into the NFL, when all of a sudden you get diagnosed with a rare form of brain cancer. Even worse, there are no approved treatments in the 5 year survival rate is under 15%. Your only hope is that your doctor can find a treatment approved for another condition to save your life. This is @RobLong47's story. Click the link below to watch the full documentary! youtu.be/hlUbaY17MjA

New feature from @_WorldSleep: bit.ly/3LoTkZe "12 years ago, when @RobLong47 was playing football, people were beginning to understand the importance of sleep for recovery. Rob soon found that sleep is important for recovery in all aspects of health." #RareDisease

Day 1 of the 4th annual #ShelicesAngels Business Academy was a success 🙏🏾 Thank you to all the business owners/leaders who dropped by to impart some knowledge on the kids about what it means to persevere and run a business Looking forward to a great day 2 🤍

Good morning from Miami. Boarding my flight home. Meanwhile, Michael A. Taylor won a World Series in Washington and heads back there for the first time this week. The Pirates’ new center fielder fascinates me. Really interesting guy: post-gazette.com/sports/jason-m…

@RobLong47's story is remarkable. He has survived for 13 years following a diagnosis of a severe type of brain cancer, all thanks repurposed drug. Yet it took over a decade for it to be officially recognized and included in the treatment protocols for his specific cancer. This scenario underscores the potential impact of sharing medical insights promptly. Had the doctor's pioneering use of the drug been disseminated 13 years ago, it could have accelerated its adoption and benefited a wider patient population sooner. At @EveryCure our mission is to foster a collaborative environment where patients, healthcare professionals, and researchers can exchange valuable information, potentially revolutionizing treatment landscapes as quickly as possible. #MedTwitter

Just a kid from Downingtown, PA. @whoward_

Thank you for all you do to bring about rare disease awareness, rare disease research, and uplifting so many individuals impacted by rare diseases!

@UpliftingAth A perfect night for baseball ⚾ @Mariners @Twins #RareDisease #WeTackleRare

Headed to see the @Mariners smoke the @Twins with our friends from @UpliftingAth 🙏 Thanks @RobLong47 team! #RareDisease #CTNNB1

Incredible speech, Jordan Pierre 🙌🏾 Keep going 🫡

The 10,000 Mile Challenge is back! Uplifting Athletes Executive Director Rob Long (@roblong47) has pledged to run 30 miles between August 10-19 in support of the rare disease community. Sign-up as an individual or team today: bit.ly/3Na0vXf #10kRareMiles

With that home run in the 5th, Michael A. Taylor makes another donation to @UpliftingAth to help support rare diseases. Learn more and join the pledge! pledgeit.org/michael-a-tayl…

Punter Nolan Cooney, who battled and overcame cancer when he was in high school, paid a visit to Phoenix Children's Hospital yesterday to provide some smiles 😄 azcardinals.com/news/cancer-vi…

Our next panel of experts discuss incentivizing #raredisease research and development! #RareDiseaseDay #parare

Today is #RareDiseaseDay! I shared some of my rare journey with the incredible Dr. Moyez Jiwa. I hope you’ll check it out! #WeTackleRare

Stuart Siedman, Global Head of Patient Advocacy, Rare Diseases, joined @RobLong47, @jrandallallen and Sarah Thomas in a panel discussion to share their personal stories with the student athletes in attendance, putting an important spotlight on the impact of rare diseases.