NORD has been very encouraging to the patient support group which I run, for my own rare disease, Eosinophilia Myalgia Syndrome. NORD has treated our tiny organization with great respect and has been helpful in getting the word out to new patients. NORD provides real information on its website about Eosinophilia Myalgia Syndrome, which is in contrast to the vast amount of misinformation on other websites. We are a small group, we are very sick people. Our disease is not understood by the medical community so we get very little medical help and are in pretty much constant physical pain. At present we are blessed with new research, after many years of nothing. NORD has been holding our hand through it all. At the moment we are hopeful. We are thankful to NORD. www.nemsn.org
We are a family that donates into NORD's research grant program every year. While the donations are not always large amounts, we know when we send in money that it's being used for the exact purpose that we intended it to.
Being a NORD member has helped AXYS ( genetic.org) by giving us viability. Two organizations, a student group in Texas holding a Rare Disease day and an advocacy group found us just this week.
I was honored to attend the NORD Summit in DC as a scholarship recipient. The sessions were top drawer, but being able to connect with other leaders of orgs was priceless. Having discussions on databases, boards and volunteers brought AXYS valuable insight.
The website, webinars, and reference materials all make being a part of NORD a must have for small organizations such as AXYS!
I'm one of the leader of a non-profit organization for a rare disease. The National Organization for Rare Disorders (NORD) has been helpful for our organization for years. NORD helped us establish a natural history registry, NORD helped us with multiple organizational aspects of our organization. NORD also offers multiple educational conferences and webinars. NORD plays an important role connecting rare diseases foundations with the pharmaceutical companies and other agencies like the FDA.
Over the last year I've been on NADF's staff (The National Adrenal Diseases Foundation) and was introduced to NORD. I have been tremendously impressed with the quality and quantity of resources they provide to the rare disease community. Webinars, e-news and the professional support to rare disease community leaders are tremendously valuable and greatly appreciated. We have a lot more to explore with NORD and I welcome the partnership.
NORD is a wonderful resource for those with rare diseases. My son suffers from a rare disease and NORD provides support and resources/research for so many individuals just like him. We are thankful for their efforts! I had the privilege of taking part in a Running for Rare event in New York City and what an amazing opportunity from a great organization. Kudos to them and keep doing what you are doing!
NORD has been instrumental in assisting us with information regarding my child’s rare disease. They are knowledgeable and help drive the research process for all rare diseases farther. I am glad I found NORD and appreciate all of the work they put into researching rare diseases.
NORD has been such a blessing to me! From help with finding info about my disorder to medical assistance, I wouldn't be where I am today without their help!!!
NORD is an incredible organization for those who are suffering with a rare disease. Their hard work and available resources help those in various communities suffering with a rare disease get the necessary information they are looking for during a very stressful time in their lives. Thank you NORD for all that you do!
I have a grandson with NF1. NORD has been a great resource for my family. Families need to understand that they are not alone. It is organizations such as NORD that help walk you through understanding the disease and other great benefits come with that!
A truly wonderful organization that allows rare patients to connect with patient leaders, researchers and a wealth of resources. I always inspired by the commitment, resilience and expertise of all those at NORD to bring about a truly patient-centric experience!
NORD is an outstanding organization! The help that NORD provides to the 7000 rare disorder communities cannot be measured. We are currently talking with NORD about setting up a registry for our rare disorder. I attend NORD functions and interact with NORD staff, who are top notch. I have learned so much from NORD staff, other leaders I've met through NORD, and medical professionals I've met at NORD functions.
NORD has been a “game changer” for those who have a rare disease. Many conditions are served by small organizations. The resources NORD provides including education and networking enable these organizations to increase their impact greatly. It also amplifies the collective voices of the community to speak as one.
NORD does so much wonderful work for the rare disease community. My 7 yr old granddaughter has a rare terminal genetic disorder called Metachromatic Leukodystrophy (MLD). NORD has been instrumental in training and supporting me to become an effective patient advocate for my granddaughter and all the rare disease community in Texas. Through NORD and the Rare Action Network, we have successfully helped get key legislation passed in Texas, for example a Step Therapy Drug bill, Newborn Screening Expansion bills and Medicaid reform bills. I highly recommend becoming involved with this terrific organization!
NORD provides so much to people in so many areas. They provide so much real world educational information to patients, providers, and caregivers through their webinars, rare disease information, etc. They also provide excellent financial support programs for patients and even recently added a program for caregiver respite - a rarity in the field. It's a pleasure to work with their staff on projects, as they're passionate about the cause. I have worked with NORD long term and they've always been a wonderful resource to me on my journey as a rare disease patient.
Brittany Hoffman at NORD has been a true pleasure to work with! We are annual donors and i have worked with her at least the last two years. When my great granddaughter was diagnosed with IS, i found Brittany on the other end of the line walking through the website with me as we read about what to expect. Everyone at NORD really cares about us families and we know we always have a place to turn.
I participated in this year's Boston Marathon with NORD's Running for Rare program - and WOW was I BLOWN away! I learned so much about this organization and what they mean to the rare disease community. The Running for Rare program was an incredible way to partner with a rare disease patient and establish a relationship that is life-long. Well done NORD!!!
My nephew was born with a rare disease that has the ability to be detrimental to his quality of life as he gets older. NORD has been an unbelievable resource from everything to their Rare Disease Database, patient assistance programs and conferences. Without NORD, we'd be left feeling alone and a lot less educated.
Anyone seeking assistance or advise about anything rare disease related should look no further!! NORD is the place to go!
I participated in NORD's Running for Rare program as a volunteer and community partner. From the beginning of the application process to the day of the race, Brittany was not only incredibly responsive, but she managed to check in on me and my partner daily. It is obvious that the partner and runner relationship is the most important to her. After getting involved with Running for Rare I needed some advise and assistance with my child's medication. I reached out to Brittany who connected me with people in the Danbury office who were so helpful guiding me through the application process. From NORD's volunteer programs to their patient assistance programs, this company gets a gold star for all they do for people.
I was able to run the Boston Marathon on behalf of NORD in 2018 and from star to finish it was a great experience. The NORD team made the race logistics easy and were also very supportive throughout. Building a relationship with a patient partner was the best aspect of raising money and running for NORD.
I had the honor of joining the 2018 boston marathon as a member of the NORD team. My daughter was diagnosed with Kawasaki disease decades ago so diagnosis of rare diseases has a special place in my life.
I had the chance to meet NORD seniors and was very impressed with their professionalism and desire to help as many people as possible.
This organization is truly OUTSTANDING. Without NORD, there would be so many people with nowhere to turn. They surpassed all of our family's expectations. Kudos to all of the people at NORD and THANK YOU for what you do for everyone living with a rare disease!
I am honored and blessed to be associated with a great organization. I had the privilege to represent this organization in 2018 at the Boston Marathon. The community partners and everyone involved were simply amazing. I had a chance to tell my journey and talk about my community partner Tessa Booth the night before the race and also hear the stories from other runners and those who benefit from this organization. Xo from Canada
I have a family member with a rare disease and turned to NORD for assistance. From the time I called the front desk to when I was transferred to their patient services department, I was treated with nothing but kindness. NORD has been a lifesaver in helping me understand this rare disease. Their website and rare disease reports are an incredible resource to those that are newly diagnosed and trying to understand their disease. Thank you NORD!
I was a volunteer at one of the NORD Running for Rare events and I cannot say enough great things about this organization! They all work so hard for the rare disease community, not only providing patients with support and assistance, but also in their advocacy work. They never stop! I highly recommend this organization to anyone in need of support OR even if you're just looking for an ear. They really are the only place to turn.
NORD is an incredible resource for patients, students, researchers, industry, and medical professionals. It is really your one stop shop and the staff there is so friendly and helpful!
My experience with NORD was fantastic, and they are a great advocate for rare disease patients
A representative from NORD made me cry today when applying for financial assistance for my son's rare disorder. I could not believe how insensitive she was. Then, when I called to see if I could work with someone else, the supervisor who later contacted me only left the main number so I could not call her back directly. It makes me very sad that an organization that is supposed to support patients with rare disorders and their families treats people this way and I hope it is not typical.
Review from CharityNavigator
As a Father of a daughter with a rare disease, I can't begin to describe how important NORD has been to our family. When Gaby was diagnosed in 2006 we had no where to turn with a condition that affects 1 in 2 Million. Until we found NORD! NORD is the mother ship for all us very small rare disorders like APS Type 1. When we were first introduced and got involved they were critical to providing a wealth of information about the condition...providing us with contacts that assisted us in creating our own website, and supporting us with fundraising through their restricted research grant program. So far we have 3 research projects through NORD and our working on our 4th. If you've had trouble with connectivity with NORD...I recommend contacting them again, I'm confident that the people I've interacted with are very interested in each and every one of us living day to day with the challenges of rare disorders.
I am a new Board member of NORD who is absolutely focused on ensuring that NORD ensures its relevance and importance to the patient community and the patient organizations that it serves.
NORD knows that it needs to do more than be the protector of the Orphan Drug Act. It has a new leadership team, and that leadership team has recently developed a new set of advocacy principles that we believe reflect the needs of patients with rare diseases. These include:
-- A national awareness and recognition of the challenges faced by people living with rare diseases and the associated costs to society.
-- A nation where people with rare diseases can secure access to diagnostics and therapies that extend and improve their lives.
-- A social, political, and financial culture of innovation that supports both the basic and translational research necessary to create diagnostic tests and therapies for all rare disorders.
-- A regulatory environment that encourages development and timely approval of safe and effective diagnostics and treatments for patients with rare diseases.
There is a GREAT deal more that we need to do ... and I look forward to helping the leadership and the staff of NORD to make sure we succeed in achieving these new goals.