🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

Which NORD event is right for you? #NORD is hosting 3 major events in 2025 to bring patients, advocates, researchers, and other #RareDisease leaders together to advance rare progress. Join us: 🔬 June 2–3: NORD® Rare Disease Scientific Symposium in D.C. - for researchers and

In just a few minutes, you can join the fight to #ProtectMedicaid, a program that provides life-saving health care coverage and services to those who need it most, including millions of kids and adults living with #RareDiseases. Families like Jen and Ryan, who count on #Medicaid

Speech pathologist Vanessa Abraham thought it was the flu—until she collapsed, unable to breathe or speak. A rare #GuillainBarré variant stole her voice and put her in the #ICU. Now, she's working to gain it back and support others going through similar experiences.

Listen to a SRNA "Ask the Expert" podcast on #vaccines and #immunosuppression in the context of having a rare neuroimmune disorder. You can listen and find the transcript here: srna.ngo/vax-immune #TransverseMyelitis #ADEM #MOGAD #AFM #NMOSD #Encephalomyelitis

#RareDisease #ClinicalTrials can be challenging due to small patient populations, but breakthroughs are happening every day! Learn from experts who've done it successfully at the inaugural #NORD Rare Disease Scientific Symposium: bit.ly/4hV0X7A Learn more at

Our #NORD Patient Assistance Program for #NF1 offers financial support for eligible individuals living with #Neurofibromatosis Type 1 to cover premiums and copays tied to treatment for this disorder. If you're on your NF1 journey, apply for assistance here:

There's a shortage of #geneticists right now, and with gene therapies on the horizon, they're more necessary than ever. That's why we're congratulating Madi McCune, who presented at last year's #NORDSummit, on her #graduation and admission to the MGH Institute at MassGeneral News

#Maine advocates, equip yourself to make a difference! NORD is hosting an advocacy workshop near you on Friday, June 6 from 9:00 AM – 1:00 PM in South Portland. ZERO experience needed to participate. RSVP: surveymonkey.com/r/5Z5L5FY #NORD staff will provide: - Education on

“Rare does not mean less. It means extraordinary challenges that require extraordinary love and commitment.” - Fairren, a #RareMomOnAMission for her 10-year-old daughter Kamiah. This #MothersDay, we celebrate Fairren and all #RareDisease mothers and grandmothers who fight for a

One week away! Join us at the ASGCT Annual Meeting in New Orleans, May 13–17, and dive into the latest in #GeneTherapy and #CellTherapy. Patients, caregivers, and #RareDisease advocates can attend FREE—with access to 2,000+ presentations, including #NORD's workshop about

“Wondering who will be there to support and love your child when you no longer can puts a weight on your heart that never goes away.” - Susan, a #RareMomOnAMission For 40 years, Susan has supported her children, Warren who has a #RareDisorder and Emily who has #autism, as well

Dr. Cristina Sadowsky of the Kennedy Krieger Institute, part of the NORD #RareDisease Center of Excellence with Johns Hopkins Medicine, joined SRNA for a "Community Meets Clinic" podcast to discuss her journey as a physician and the #SpinalCord rehab program at KKI. Listen here:

National Organization for Rare Disorders (NORD) launched their #Narcolepsy Patient Assistance Program, which offers eligible individuals financial support to pay for out-of-pocket healthcare costs that are directly related to the care & treatment of this diagnosis Learn more & apply: rarediseases.org/patient-assist…

Reminder! Join #NORD's virtual advocacy training this Tuesday, May 13 at 12 p.m. ET to learn how to help us advocate for #Medicaid, a vital program for millions in the #RareDisease community: bit.ly/3GsM6nV #ProtectMedicaid #RareDiseases #HealthInsurance

How can more precise diagnostic data improve #RareDisease patient care and accelerate treatment research? Join #NORD CEO Pamela Gavin, @imohealth and UNC School of Medicine for a webinar on how precision data is reshaping outcomes for rare disease communities on May 14 at 1 p.m. CT. RSVP:

“Try not to compare your children to anyone else, as they’ll each write their own story.” Meet Tara, a #RareMomOnAMission for her 3-year-old son, Dylan, who lives with a rare chromosomal disorder. Her mission is to advocate for him and pursue answers, even when they haven't yet

“Just because we carry it well doesn’t mean it’s not heavy.” Adrienne, a #RareMomOnAMission with four young children, including one with a rare condition, reminds us that #caregiving takes self-care. “We get the strength to take care of our family when we take care of

“Rare moms should run the world," says #RareMom Gillian, mother to 7-year-old Penelope who has a #RareDisorder. We don't disagree! This #MothersDay, let's honor #RareMoms like Gillian who lead with strength, love, and relentless advocacy for their kids. By building networks of

Kristan is a #RareMomOnAMission. Her son Kylan, 7, lives with a #RareDisease. “My mission is to live in a world where our children are considered in its structure,” she says. Many kids like Kylan rely on #Medicaid, a program whose funding is in jeopardy. This #MothersDay, urge

An #undiagnosed disorder runs in Christine's family. After losing her father, she went on a quest for answers about the symptoms both she and her young daughter experience. Her rock along the way was her mom, who stepped in as a caregiver for the two of them. Recently,