On the latest episode of the Atlas Obscura podcast, Cory Lee shares his life of uncovering #AccessibleTravel destinations ♿ ✈️ 🌍 while living with #SpinalMuscularAtrophy. Listen to his stories today! https://lnkd.in/dqR_H4U #Travel #WheelchairTravel #RareDisease #RareDiseases #SMA
National Organization for Rare Disorders
Non-profit Organizations
Danbury, CT 33,855 followers
Alone we are rare. Together we are strong.®
About us
The National Organization for Rare Disorders, a 501(c)(3) organization, is an independent patient advocacy organization dedicated to helping individuals with rare diseases and the organizations that serve them. NORD, along with its 330 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient support services. NORD serves all stakeholders in the rare disease community, including patients and their families, patient organizations, researchers, medical professionals, medical students, and companies developing orphan products. NORD also works closely with many government agencies, most notably the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). All NORD programs are focused on one ultimate goal -- to improve the lives of individuals and families affected by rare diseases. NORD is the official sponsor of Rare Disease Day in the US, an observance day held on the last day of February each year worldwide. Its goals are to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. To learn more, visit rarediseaseday.us. To learn more please visit the NORD website at www.rarediseases.org. You can also follow NORD on Twitter at @RareDiseases.
- Website
-
http://www.rarediseases.org
External link for National Organization for Rare Disorders
- Industry
- Non-profit Organizations
- Company size
- 51-200 employees
- Headquarters
- Danbury, CT
- Type
- Nonprofit
- Founded
- 1983
- Specialties
- rare diseases, patient assistance, patient support, rare disease information, advocacy, information for medical professionals, research, online communities, and orphan diseases
Locations
-
Primary
55 Kenosia Avenue
Danbury, CT 06810, US
-
1779 Massachusetts Avenue
Suite 500
Washington, DC 20036, US
-
1900 Crown Colony Drive, 4th floor
Quincy, MA 02169, US
Employees at National Organization for Rare Disorders
-
Lynn Crisci
Resilience Speaker / Boston Marathon Bombing Survivor / Author / Actress / Patient Advocate / Consultant / Clinical Trials / Rare Disease / Migraine…
-
Ramon L.
Senior Software Engineer
-
Sarah Krüg
-
Thomas Bartlett
Speaker - DHAI 2024 Patients and AI, WODC 2025 AI impact on Patients/Myasthenia Gravis Patient Advocate/Myasthenia Gravis Patient Digital Technology…
Updates
-
The Facial Pain Association released its second book, "Facial Pain: Living Well with #Neuropathic Facial Pain, including #TrigeminalNeuralgia." Read it during #FacialPain Awareness Month this month! https://lnkd.in/eNB-Bzus
-
Raising a son with #PraderWilli led this mom to start a nonprofit for the mental health of #caregiving moms of disabled and neurodiverse children. Learn more in this Brain & Life podcast on #WorldMentalHealthDay: https://bit.ly/3XNa8PA #PraderWilliSyndrome #MentalHealth #Caregiver #Disability #Neurodiverse #Parenting #Autism #RareDisease
We are Brave Together with Jessica Patay
brainandlife.org
-
Thank you Bionews, Inc. for spotlighting NORD's financial support for people impacted by #aHUS. Our RareCare Patient Assistance Program helps cover out-of-pocket health care expenses, easing the financial burden on families. We also offer Emergency Relief that helps with unexpected non-medical expenses so that an unexpected setback doesn't jeopardize your health care. Read the article to learn how we assist the #AtypicalHUS community and others with #RareDiseases! #RareCare #HealthcareSupport #PatientAssistance #FinancialAid #RareDiseaseCommunity #NORD #Caregiving
NORD offering patient assistance programs to cover costs of aHUS
https://ahusnews.com
-
Today is #WorldMentalHealthDay! If you're a #RareDisease patient or caregiver, you know the effects it can have on your #MentalHealth. Now, learn the solutions by watching our recent webinar: https://lnkd.in/e9RWq_tj
-
JUST ANNOUNCED: #FDA Commissioner Dr. Robert Califf will sit for a fireside chat with #CMS Deputy Administrator & Director of the Center for #Medicare, Dr. Meena Seshamani, at the #NORDSummit on October 22! Get tickets: https://nordsummit.org/
-
Thank you Bionews, Inc. for spotlighting NORD's financial support for people impacted by #BattenDisease. Through our RareCare Patient Assistance Program, we help cover health care expenses not covered by insurance, easing the financial burden on families. We also offer an Emergency Relief Program that covers emergency non-medical costs so that an unexpected setback doesn't jeopardize your health care. Read the article to learn more about how we’re making a difference for the #Batten community and other #RareDiseases! #RareCare #HealthcareSupport #PatientAssistance #FinancialAid #RareDiseaseCommunity #NORD #Caregiving
NORD's Patient Assistance Program helps cover Batten care costs
https://battendiseasenews.com
-
The Sickle Cell Disease Association of America, Inc. — National will hold its 52nd annual convention Wed, Oct. 23 - Sat, Oct. 26 in Atlanta, GA! Theme: “Momentum: A Journey into a New #SickleCell Era.” Register here: https://lnkd.in/e7-PmrDj #SickeCellDisease #SickleCellAnemia #Atlanta #Georgia #Hematology
Annual National Convention - Sickle Cell Disease Association of America Inc.
https://www.sicklecelldisease.org
-
#Vermont rare disease advocates are invited to join NORD at the Miller Center Community Room in #Burlington on Saturday, November 2 from 10am– 2pm for a special advocacy workshop! Register here: https://lnkd.in/eXP6pkEs NORD staff will provide: - Lunch and refreshments - Education on Rare Disease Advisory Councils - A workshop on how to effectively meet with your legislators - An overview of NORD and how you can participate in raising awareness for the #VT #RareDisease community We hope you will join us!
-
The United MSD Foundation, CureMSD, is seeking board members to join their board in January 2025. It's an exciting time for the #MSD community with two clinical trials opening in 2025. Visit https://lnkd.in/edabCwjY for more info. #MultipleSulfataseDeficiency
Our Team - United MSD Foundation
https://curemsd.org