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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · 2d

Meet the patient advocacy leaders shaping the future of #RareDisease care.

At the 2025 #NORD Breakthrough Summit, they'll discuss clinical trial innovation, pediatric R&D, collaboration models, and more.

Register to hear their voices and their visions: bit.ly/4lSAkDq

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · 2d

Meet the patient advocacy leaders shaping the future of #RareDisease care.

At the 2025 #NORD Breakthrough Summit, they'll discuss clinical trial innovation, pediatric R&D, collaboration models, and more.

Register to hear their voices and their visions: bit.ly/4lSAkDq

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · 12d

New #CME on #GiantCellArteritis highlights the importance of early diagnosis and sustained remission to prevent blindness, stroke, and relapse. Including updates on imaging, diagnostics, and targeted biologics.

Enroll for free at
@medliveofficial
: 🩺 bit.ly/46cSDML

National Organization for Rare Disorders (NORD) @nordrare.bsky.social · 13d

🚨 Big news! Dr. Jay Bhattacharya, Director of the National Institutes of Health (NIH) will deliver a special address to the #RareDisease community at the 2025 NORD Breakthrough Summit, Oct. 19-21 in D.C.

This is your chance to hear directly from #NIH leadership! Register to attend: bit.ly/4lSAkDq

National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Sep 4

Final week of #NORDSummit early bird pricing!

Save hundreds when you attend the most anticipated #RareDisease conference for the #pharmaceutical, #biotech, and #MedicalDevice industries.

Register your team for the NORD Rare Diseases & Orphan Products Breakthrough Summit today at nordsummit.org.

Promotional graphic for the NORD Summit, October 19-21, 2025 in Washington, D.C., featuring a photo of a rare disorder patient speaking at a past event and the headline, "Register by September 8 to save up to $300!"

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Aug 27

How can #AI advance patient-centered drug development?

#RareDisease experts will tackle this at the 2025 NORD Rare Diseases & Orphan Products Breakthrough Summit this October during a session led by Tracey Sikora, VP of Research & Clinical Programs at #NORD.

Learn more and RSVP: nordsummit.org

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Aug 22

Media passes available!

The #NORD Breakthrough Summit, Oct. 19-21 in D.C., offers direct access to #RareDisease experts, patient advocates, industry executives, regulatory leaders, and investors to explore the latest developments in rare science, policy, and more.

rarediseases.org/nords-2025-r...

NORD’s 2025 Rare Diseases & Orphan Products Breakthrough Summit to Spotlight CEOs, Investors, and Regulatory Leaders Driving Innovation - National Organization for Rare Disorders

“The NORD Breakthrough Summit isn’t just a gathering — it’s a catalyst for solving one of America’s most urgent public health challenges,” said Pamela K.

rarediseases.org

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Reposted by National Organization for Rare Disorders (NORD)

Appendix Cancer PMP Research Foundation @acpmpresearch.bsky.social · Aug 14

ACPMP is proud to fund two $50K Catalyst Research Grants through the @nordrare.bsky.social #RareDisease Research Program.

These grants will support scientific and/or clinical research related to #AppendixCancer/PMP

Apps due: October 12, 2025
Apply now: rarediseases.org/advancing......

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Aug 20

On #NationalPatientAdvocacyDay, we celebrate every patient advocate. 💙 Whether dedicating a career or rising to an unexpected challenge, your courage, persistence, and heart drive change.

Thank you for using your voice to uplift, fight, and lead the #RareDisease community. ✨

#ThankYouAdvocates

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Aug 12

The landscape of #RareDisease diagnosis and treatment is rapidly changing. What do clinicians, health care administrators, insurers, and others working in #medicine need to know?

Find out at the 2025 NORD Breakthrough Summit. RSVP for the #NORDSummit now: nordsummit.org

Promotional poster for the NORD Breakthrough Summit from October 19-21, 2025, featuring a speaker at a podium discussing the future of diagnosis and treatment for rare and genetic disorders. Includes a colorful graphic of a city skyline and a call to action to register today.

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Jul 29

The National Organization for Rare Disorders (NORD) is excited to attend the @ncslorg.bsky.social 2025 Legislative Summit in Boston next week to advocate for critical state #RareDisease policies.

If you’re attending, visit us in the #NCSLsummit exhibit hall! Details: www.ncsl.org/events/2025-...

NCSL Legislative Summit in Boston August 4-6, 2025. Find us in the exhibit hall #NCSLsummit.

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Reposted by National Organization for Rare Disorders (NORD)

Medlive - A PlatformQ Health Brand @medliveofficial.bsky.social · Jul 24

Happening today at 2:30pm ET: A vital CME session on #IgAN care, covering mechanisms to management. Proud to partner with @kdigo.org & @nordrare.bsky.social

Don’t miss it 🔗 bit.ly/44ZyEkg

#Nephrology #CKD #MedicalEducation #CME #KDIGO #MedLive

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Jul 7

New to your #RareDisease journey or years in, you’re not alone. Join #NORD on July 17 at 6 p.m. ET for “Finding Strength in Self-Acceptance”—a virtual talk on emotional well-being, self-advocacy & connection. RSVP: bit.ly/4nEeTXZ
#RareDiseases #PatientSupport #SupportGroup #SelfAcceptance

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Jul 7

New Yorkers! Are you passionate about #RareDiseases? Join the #NewYorkState Rare Disease Advisory Council!

We’re looking for individuals from #NewYork with diverse #RareDisease perspectives & experiences to help shape policies that support rare New Yorkers. Apply now: forms.office.com/g/FVwD7VPteQ

Rare Disease Advocacy Opportunity for New York: Apply to Join the NYS Rare Disease Advisory Council. Who can join? Patients, caregivers, advocates, healthcare professionals, scientists, researchers, and insurance representatives.

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Jul 3

Today our #RareDisease community received heartbreaking news. Newly passed legislation will create major barriers to #Medicaid access for millions, including those with #RareDiseases. This puts vital health coverage at risk for those who need it most.

Hear more in #NORD CEO Pam Gavin’s message.

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Jul 1

The #Senate passed legislation that, if signed into law, imposes dramatic and harmful barriers to #Medicaid for #RareDisease patients. Tell your Representative in the House to reject the Senate-passed bill!

1. Call and use this script: bit.ly/4k8Wsro

2. Send this NORD action alert: bit.ly/41uFH3W

Rare disease action alert! Tell your Representative to REJECT the Senate's Proposed Medicaid Cuts. 1. Call the Capitol Switchboard at 202-224-3121 and ask to be connected to your Representative's office. 2. Take action at the link above (takes 1 minute). Deadline: today and tomorrow.

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Jun 27

NORD Rare Disease Center of Excellence @emorygenetics.bsky.social staff spoke at our #LivingRareGeorgia event!

Dr. Hong Li, a Georgia #RareDisease Advisory Council member, discussed how a #CenterOfExcellence can help you access specialized care.

Find one here: rarediseases.org/center-of-excellence

Staff from the NORD Rare Disease Center of Excellence at Emory University School of Medicine and Children's Healthcare of Atlanta speaking on stage during a panel discussion at the NORD Living Rare, Living Stronger Georgia event.

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Jun 27

#NORD events like today's #LivingRareGeorgia patient and family meeting connect people living with #RareDiseases and doctors who treat them — like #geneticist Dr. Rossana Sanchez of @emorydeptofmed.bsky.social, a NORD Rare Disease Center of Excellence, pictured here (right) with a family she treats!

Dr. Rossana Sanchez (right) with a mother and daughter she treats, posing at the NORD Living Rare, Living Stronger event in Atlanta, Georgia.

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Jun 27

Tomorrow is #IPKUDay! Check out this great program from the NORD Rare Disease Center of Excellence at @emorygenetics.bsky.social.

NORD offers financial assistance to #PKU patients in need. Apply here: bit.ly/4czUzRE

If you live in #Canada, learn about the Canadian PKU Registry at pkuregistry.ca.

NORD RareCare Phenylketonuria (PKU) Patient Assistance Program may help cover the following PKU-related costs: health insurance premiums, deductibles and copays; out-of-pocket costs of appointments and tests; physician-prescribed medical foods and formulas; and travel and lodging expenses for PKU medical appointments. Apply today.

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Jun 18

🚨 Attention #PublicHealth and #RareDisease Researchers: Share your groundbreaking work at the 2025 #NORDSummit!

Submit your abstract by midnight, July 18 for display in the Poster Hall + a chance to present your #research on the main stage.

Check out the categories and apply now: bit.ly/3LiYAw8

Photo of presenters in the poster hall at the NORD Breakthrough Summit. Abstract submissions due by July 18, 2025 at midnight Eastern time.

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Jun 13

The #NewYork #RareDisease Advisory Council bill, #A1296A, may be on a debate list in Albany, but here's what's not up for debate: the daily realities of 1.8 million #NewYorkers navigating #RareDiseases. Ask for your Assemblymember's support TODAY: rareaction.org/take-action/#/252

#NYS #NYC #NYleg

Rare Disease Action Alert! New York State: Tell your assemblymember to pass A1296-A today to support a New York Rare Disease Advisory Council.

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Jun 13

If you live in the #Atlanta, #Georgia area, come meet your local #NORD Rare Disease Center of Excellence - the Emory University Human Genetics team, @emorygenetics.bsky.social at @emorydeptofmed.bsky.social and Children's Healthcare of Atlanta - June 27 at the Georgia Aquarium! Visit LivingRare.org.

Emory Department of Human Genetics @emorygenetics.bsky.social · Jun 11

Looking forward to Living Rare conference at Georgia Aquarium June 27 -- three of our folks talking about genetic testing, clinical trials and more #rarediseases @nordrare.bsky.social livingrare.org/georgia-meet...

Agenda - Living Rare Living Stronger

livingrare.org

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Jun 9

Attention #sarcoidosis community! Attend the Global Virtual #StopSarcoidosis Summit, June 28-29, a virtual event offering countless helpful resources and 20+ live, interactive virtual sessions with world-renowned medical experts. RSVP here today: loom.ly/aLYtjh0

#FSR2025 #SarcoidosisSummit

FSR Sarcoidosis Summit: United for Progress - A New Chapter in Sarcoidosis

Join FSR for our Global Virtual Sarcoidosis Education Summit!

loom.ly

Reposted by National Organization for Rare Disorders (NORD)

Medlive - A PlatformQ Health Brand @medliveofficial.bsky.social · Jun 6

We recently attended @nordrare.bsky.social's Rare Disease Scientific Symposium to explore new clinical trial designs, the translation of patient data into insights, & the role of real-world data in shaping education

Thank you to NORD, our partner since 2019, for hosting this event! 🔗 bit.ly/4kwnrhy

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National Organization for Rare Disorders (NORD) @nordrare.bsky.social · Jun 6

Putting a name to your kid's #RareDisease can be a victory itself. Sometimes, that name doesn't exist.

We're thrilled for the families who helped discover #ReNUSyndrome with experts at @childrensnational.bsky.social, a #NORD Rare Disease Center of Excellence!

www.washingtonpost.com/dc-md-va/202...

Their children have a rare condition. They didn’t know its name – until now.

Five families with children who have the newly discovered rare condition, ReNU syndrome, recently gathered in a D.C. park. Scientists believe 100,000 more people have it.

www.washingtonpost.com

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