I have been attending NORD events and online programming for more than 10 years and am always impressed by the quality of the content and execution. The staff is professional and helpful. In addition to capacity building for rare disease organizations, NORD helps rally and educate the community to advance legislation at the state and federal levels to encourage development of new treatments and ensure patients have access to needed treatment and care. Their patient assistance and caregiver relief programs are critical to rare disease patients across the country.
I got involved with this incredible organization through their Running For Rare program running in memory of my late wife Stacey who died at 33 from a rare disease, leaving behind both myself and our infant daughter. NORD has been an incredible advocate for patients with rare diseases and I look forward to continue working with them!
I joined NORD as a student researcher, new to the field of rare diseases and translational medicine. From the moment I first reached out to NORD in 2023, the incredible team welcomed me like family. They guided me to better understand rare diseases, the urgent need for new therapies, and the powerful role students can play in the rare disease community.
Since then, I have had the privilege of advocating for rare diseases in my home state and the world's largest medical center. I have also recruited top medical experts, scientists, and students to participate in new programs that support NORD's mission and help establish a rare disease hub. This initiative aims to make a meaningful impact on patient advocacy, fundraising, therapy development, and advancing research and diagnostics.
I am incredibly proud to be part of the rare disease community. None of this would have been possible without NORD and the amazing work they do to support everyone, regardless of their background. Thank you, NORD!
I had the opportunity to work with NORD at their annual summit in DC as a keynote speaker and as a member of Students for Rare. It was incredible to see the rare community come together to raise awareness, advocate in front of lawmakers, and form supportive relationships. NORD does a wonderful job of connecting patients with rare diseases and helping them feel less alone. They serve as the voice for the rare disease community who so desperately needs to be heard.
I participated in NORD's Running for Rare in 2023. As I started my journey on the team, I learned so much about NORD and how they embrace the rare disease community. I have continued to brag about them to anyone I converse with that has anything to do with rare disorders. Oftentimes, when diagnosed with something extremely rare, you feel as though you're on an unreachable island. Stranded. NORD provides empathy and resources to bring you back to the mainland. Forever grateful for this nonprofit.
NORD's reports on rare diseases were extremely helpful for my family when my father was hospitalized earlier this year with a broken hip. His rare disease impacts less than 500 people in the United States and his surgeon had never heard of the condition, nor did she understand that impact his condition would have on his recovery. My family and I printed copies of the report for the doctors, nurses, OTs, and PTs in the hospital and in rehab facilities so that they would better understand his needs. The PTs in rehab were especially thankful to have these invaluable resources, because his mobility was already severely limited before the surgery and otherwise, they wouldn't have understood what type of exercises were even physically possible for him to do. Thank you, NORD, for providing education that matters!
NORD is one of the most active nonprofits in the rare space, bringing together stakeholders from all across the rare disease field. They help bring awareness, education, and assistance to supporting rare disease policy, treatments, and individuals seeking guidance in their journey. They continually strive to promote and share out the latest new and resources while keeping their website up to date and easy to use.
As the CME provider for the National Organization for Rare Disorders (NORD) since 2019, we’ve had the privilege of collaborating with an incredibly dedicated team. Over the years, we’ve developed over 100 CME programs together, all focused on raising awareness of rare diseases and improving outcomes for rare disease patients. NORD is deeply committed to reducing the time to diagnosis and raising the index of suspicion for rare diseases, a goal that resonates throughout every project and interaction.
Working with the NORD team is always a pleasure—they’re passionate, professional, and driven by a genuine commitment to the rare disease community. NORD’s work is invaluable, providing resources, education, and advocacy for patients and families affected by rare diseases. They are truly a cornerstone of support and a powerful voice in the rare disease space. I highly recommend NORD to anyone looking to engage with an organization making a real impact in healthcare and patient advocacy.
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NORD is an incredible organization. I have had the pleasure of working with NORD to develop education for patients and healthcare providers. They are incredibly passionate about helping all patients, caregivers, and families impacted by rare disorders. They host two incredible conferences every year, The Living Rare, Living Stronger Forum and The NORD Breakthrough Summit, where they bring all the stakeholders in rare disorders together to learn from each other. Both events are extremely impactful and informative. NORD has also been instrumental in helping to highlight the patient voice in our educational initiatives through the inclusion of their Member Organizations. I would recommend NORD and their resources to everyone looking for support, information, or education on rare disorders!
My name is Tanita Allen and I had the pleasure of attending the NORD Summit in 2024. I was given the wonderful opportunity to meet other people in the Rare Disorders community. I was able to share my story with NORD's platform. They people at NORD were amazing! I learned so much attention this Summit. NORD definitely deserves support and recognition for the outstanding job that it's organization does!
I just returned from the NORD Summit in DC. They did a phenomenal job with the summit and bringing together the rare disease community and providing critical information and resources.
In April 2021 my two daughters were both diagnosed with Malan Syndrome .Malan Syndrome is a rare genetic disorder that is the result of a change in the NFIX gene, it is characterized by overgrowth,ect. I had the pleasure to be introduced to NORD by one of my Malan family member, and ever since then I do all I can to help NORD, they helped me and my family be able to attend our very own first conference and the very first for the foundation. They helped us to cover our travel and lodging expenses. Iam forever thankful for them and for all they do for the Hispanic community as well! They have amazing people with them like Darby A Gavin, she is amazing. So thankful for NORD!!
We run a charitable organization that helps children with rare life limiting disorders. We wanted to start a program to give those children and their families amazing experiences so they could create lifelong memories. We partnered with NORD to create that program and could not be happier with the results. The team at NORD is wonderful, compassionate, and professional. They truly care about making a difference and they have made a lasting impact on our family and our organization.
I became part of NORD as a State Volunteer RAN Ambassador. I have five in my family with a Rare Bleeding Disorder. I loved NORD’s Mission Statement for patients on a local, state, and federal level in Policy, community involvement, and even inviting students to become part of the organization in Students for Rare program. NORD organization works first to bring awareness, then follows up with advocacy a strong combination. I love being a part of their Mission. It takes a village so we keep growing.
NORD is the leading source of information about numerous rare diseases. The provide a variety of educational webinars that help a rare disease patient advocate for their needs. Their policy team helps drive changes to improve health equity. Lastly, they value and appreciate their volunteers.
I attended this years Patient and Family Forum virtually. As a caregiver, I found the information presented to be informative, educational, and helpful. The speakers and panels all were excellent. I would highly recommend attending this event and hope to do so again next year. Thank you NORD for making this program available.
I am not only a volunteer but also a caregiver for multiple people in my family with rare diseases. NORD is an outstanding organization that supports at every level. Not only for patients and caregivers, but as a volunteer this year I needed a few weeks away to care for our son and there were no issues, no questions asked. I was encouraged to care for myself and our son. The focus on the organization is truly on patients - from education, to advocacy, to working to create and/or change policy. I am also on the board of another member organization that receives support from NORD as another nonprofit benefiting from all that NORD offers others in the rare disease sector.
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NORD has helped me to identify the rare diseases that effect my family, given me resources that I know I can depend on for information & support and given me a way to give back to the community that has helped me so much. As a volunteer now they value our time and commitment as well as our experience as rare disease patients and caregivers. The experience of attending summit and seeing the experts that they bring together in our field was one of a kind and gave us, as volunteers an opportunity to collaborate and network with peers and others within the rare disease community. The connections and reputation they have in this arena is second to none. As a volunteer with NORD's Rare Action Network I know that the work I do is making a difference.
As a patient advocacy organization, we treasure our NORD membership! Whether we are seeking resources to bolster our foundation or educate patients, or working together to support our community through unique programs, the people at NORD are always willing to help. We are stronger together and our collective voice uniting with other rare disease advocacy groups through NORD has allowed us to impact meaningful change for patients living with hypophosphatasia.
It is with great pleasure and honor that I have the privilege to write this review.
It is important that recognize those who have dedicated themselves in making a difference in the lives of others.
In my role as a Project Manager, Undiagnosed Diseases Network (UDN), it is evident that our patients, their families and I are immeasurably altered by the service we have received by NORD.
On April 15, 2023, in Boston, I ran the BAA5k with the NORD Running for Rare (R4R) team. Our contributions were applied to the Patient Assist Program managed by NORD which allows patients who are financially challenged to receive assistance for co-pays, deductibles, travel, and testing not covered by insurance.
NORD personally and professionally has made me a better person, in conclusion, I am reminded that "Alone We are Rare, and Together We are Strong."
The National Organization for Rare Disorders (NORD) has provided incredible support to undiagnosed patients and families through their Patient Assistance Program. Without this program, many patients and families would be facing costs associated with diagnostic evaluation. We greatly appreciate NORD's support and collaboration over the years!
I am a current Fellow at the U.S. Food and Drug Administration. I only learned recently about the NORD Summit and a potential opportunity to present our research the annual event in October.
Given my academic curriculum, the fast-approaching deadline, and other work commitments, the deadline for abstract submission seemed unreachable. Jaime and her administrative team at NORD kindly addressed my concerns in a timely and considerate manner and followed up with all parties to accept and review our submission. I was so happy to be notified that I would be able to present and attend the conference in October 2023. Thank you and your team for being receptive, understanding, and encouraging to students, fellows, and professionals who aspire to help develop therapies for rare diseases.
NORD is the best organization for Rare Disease information. The staff is fantastic and extremely helpful with all questions. Their annual Forum is great for us to get together and meet other rare disease patients as well as learn about ways to deal with having a rare disease. NORD is just super in every aspect!
NORD is an amazing nonprofit that deserves recognition for everything it does for the rare community. I had the honor of attending the 2023 Living Rare Forum. As a caregiver and mom of a child with a rare neurological disorder, NORD has been a lifeline to my family. The individuals who work for this NFP and those who donate to NORD are helping to make the lives better of people living with rare diseases everyday!
I have two children with Spinal Muscular Atrophy and NORD has been a helpful resource in connecting me to resources,
programs, advocacy opportunities and most importantly - the incredible community that is the rare disease community.
Our son has a rare genetic disorder called Klippel-Feil Syndrome. When our son was diagnosed with KFS, we asked if there were any medical studies we could review or have him participate in. The answer was no. About 7 years later, the answer is still no medical studies on KFS. . NORD is the only nonprofit we could find that has a fund designated to raise money for KFS research. There is much to learn about KFS and how to improve the quality of life for those with the disorder. Zero studies is discouraging. The possibility of funding just one medical study might seem insignificant to some. However, any hope of more knowledge about a rare disorder that could lead to improved quality of life for the approximately 1 in 45,000 with KFS is encouraging. Especially when that 1 in the statistic is your child. Thank you NORD for serving and advocating for those who are otherwise overlooked by the medical system.
Thirty-three years ago our daughter Kelly was born with what several world renowned physicians described as a rare inborn error of metabolism. Nothing prepares a family for the birth of a baby with a serious medical condition...and it is even worse when that condition is so rare that only a handful of medical specialists in the US may have seen a similar disease or may be able to help. For ~40 years the National Organization for Rare Disorders (NORD) has been there to help families such as ours with information on rare diseases from reliable resources such as researchers at NIH, EURODIS, and major academic centers around the world. Two of the biggest challenges for families caring for a loved one with a rare disease are the financial burden of a rare disease and feeling that they are facing these challenges alone. Having a rare disease places a HUGE financial impact on a patient and the patient’s family—not only is the family faced with traveling hundreds of miles for visits with healthcare providers at specialty centers; families are often faced with paying for tests, nutritional supplements, treatments, services and medications that may not be covered by insurance. Since families caring for a loved one with a rare disease often feel isolated, connecting with others facing the challenges of a rare disorder is essential not only for support but to share information and resources. Our family can’t thank NORD enough for being there to help. Over the years NORD has helped many families in our state with the financial burden of caring for a loved one with a rare disorder through its own patient assistance program and other resources….and NORD is also there to help patients and their families find support groups and help through the Rare Action Network in each state.
As a parent of two children with a rare metabolic disease, NORD has been a great source of support for my family and many others. NORD brings all stakeholders (patients, caregivers, medical professionals, researchers, pharmaceuticals etc.) together in our quest for find a cure for the conditions of our loved ones. I am proud to volunteer with NORD for the past many years.
Fantastic Organization! Have been serving as a volunteer for a few years helping to coordinate events in raising awareness and support of Rare Disease community.
NORD was full of learning, networking, and confirming (once again) how great the Rare Disease community really is. This is one of my favorite organizations and the conference topics were so in line with topics that need to be discussed. One of my favorite panels was with someone from ICER, and someone from Medicaid when going over pricing for therapies. The event was organized so well, and I could not be more grateful for having a place to connect people with resources and find new resources we can share on our end. Thank you for an amazing experience!
NORD is a true leader in the non profit rare disease space and is helping all 7,000 rare diseases to have a voice and drive drug development forward. NORD's work is instrumental in building collaboration between patients, patient advocacy, legislators, regulators, and industry.
My son Rob has an ultra-rare disease, Dystonia 16. He is the only reported case in the U.S., and among only about 20 reported cases worldwide. Rob was undiagnosed for 14 years. Our family never really "fit" with any group when it came to disease advocacy groups, and even rare disease advocacy groups. But when I became active with NORD's Rare Action Network, I found our people! No other organization does as much to create community for those us of in the "ultra-rare" camp. Rob and I are proud to represent NORD.
Working with NORD has benefited my Rare Disease Child, Kinsley, in many ways. Providing resources and support to our family. Hearing family stories; the highs and lows have helped me feel like I am not alone in my journey. The opportunity that I have been given to advocate and share Kinsley's story has been received with kindness and compassion. Bringing hope for a brighter future for her and all rare disease patients and families
NORD 's 2022 Breakthrough Summit was incredibly informative and helped me network with like-minded individuals working towards the same goal: to improve access to rare disease drugs for patients with rare diseases.
NORD has opened my eyes to the Rare community. Being diagnosed with a rare illness like Behçet’s Disease, I never thought I’d be a part of a larger community. But I have been accepted in ways I didn’t even know I needed to be, simply by being at NORD’s most recent Summit. These folks care.
Thank you, NORD, for all that you do for Rare folks like me.
My association with NORD began sometime around year 2000. Since then NORD has been instrumental in our accomplishments. They are with us every step of the way: Here are some:
raising awareness, advocating public policy, the inclusion of RD in the drugs and cosmetic act 1945, amendments of the clinical trial rules 2019, the inclusion of orphan drugs in the PLI schemes, eligibility of CSR schemes, medicines for compassionate use, the interest of pharma industry to manufacture Orphan drugs, and national RD healthcare policy, educating pharmacists, physicians, etc.
Without their support we would not have become only the umbrella organization in India representing all 7000 rare diseases and 90 million patients.
https://drive.google.com/file/d/1dkICzsHuSoTKjBM2Kl_w1_Hbh88h9_xr/view?usp=shari
ng A legislative measure - the State of Minnesota – Rare Diseases Advisory Committee
https://youtu.be/rmn-_W8eDIM Patient. voices of rare diseases patients
http://www.pharmabiz.com/NewsDetails.aspx?aid=130142&sid=1 appeal to the GoI for
incentives to pharma industry
https://drive.google.com/file/d/0By-soimZ9cNcbVd6TW1PbkRqQnM/view?resourcekey=0-DmZVKYj2UDdtabpzCSGNBA white paper
I was honored to serve as a moderator of a National Organization for Rare Disorders (NORD) “Rare Summit” breakout session called, “Selecting Outcomes That are Truly Meaningful to Patients” with three other experts: Sarita Edwards & Drs. Naomi Knoble and Lindsey Murray.
Representing the E.WE Foundation (a healthcare advocacy organization that supports families affected by Edwards Syndrome), the FDA, and the Critical Path Institute, respectively, these panelists energized the entire room where the presentation was given. One theme that was paramount during the panel was to include the patient voice at every step of the rare and orphan drug development process.
This was my first NORD meeting and was thankful the conference was conducted in a face-to-face manner. As a parent of two kids with a rare disease called Facioscapulohumeral muscular dystrophy, I felt like I was among kindred spirits. I appreciated the opportunity to pet a patient’s comfort canine - as well as shake hands and receive hugs from both rare disease patients and caregivers.
The remarks and participation from the FDA presenters highlighted their exceptional support for the rare disease community. It started with the Commissioner’s keynote address and continued to be felt as I listed to other FDA presenters, including the remarks from Dr. Knoble during our panel session.
NORD has been instrumental in helping me as a cancer foundation leader in more ways than I can mention over the past eight years. A few points of importance:
-Foundation growth and development: NORD's resources, both in person and online have been critical to guiding our governance, board development, and policies
-Fund raising: Due to NORD's invitation to have me Co-lead the Rare Cancer Coalition, the Chan Zuckerberg Initiative granted my foundation (Fibrolamellar Cancer Foundation) $600K
-Awareness Building: NORD help support the concept of creating a Rare Cancer Day- which recently celebrated its 5th anniversary. This has mobilized political, industry, patient/caregiver communities and brought awareness to the critical needs of rare cancers
-Key Opinion Leader Access: NORD is always very responsive to our foundation needs with insights that make a difference, including helping craft major conference panel discussions on critical needs of the rare cancer community
Bottom line, as an industry executive who took on a major challenge of growing an ultra-rare cancer foundation, NORD has been instrumental in our success.
My father is in his 70s and has a rare neuromuscular disease. There's no patient group for it. NORD's webinars and communications are his only connection to the rare community, and they have consistently helped him feel less alone. THANK YOU to NORD for providing meaningful programming to combat isolation and empower patients and caregivers!
NORD is the umbrella organization for rare diseases. The American Behcet’s Disease Association is a proud member, as are hundreds of other patient advocacy groups. NORD provides patient organizations, patients and all stakeholders with the opportunity to interact, learn about new therapies, deepen understanding of the impact of rare diseases on everyday life and most importantly, give the rare community hope for a brighter, healthier future, which encompasses equity, diversity, inclusion and patient centricity. NORD’s advocacy efforts provide essential guidance for our rare community. We’re truly grateful to be a part of NORD.
I have two rare diseases and when people hear that they usually run the other way! Well NORD not only embraced me and made me feel welcome, but they are constantly offering opportunities to be an advocate for other rare patients! After attending their conference this year there is no question as to what their time, efforts, and resources go toward. They work in so many ways to help the rare community thrive and empower us into living the best lives that we can! So glad to have found them!
I can't say enough wonderful things about this organization. I have been involved with NORD since 2018 after I was diagnosed with a rare disease called Stiff Person Syndrome. After realizing that funding for research was a challenge, I reached out to them for information as I was told they are the leaders in the rare disease space. From the first contact, I was hooked. They directed me to different resources and were supportive in my efforts to start The Stiff Person Syndrome Research Foundation in 2019. Since then, it's been nonstop collaboration! I got to share my story as a rare disease patient and was on a panel with my neurologist and three other groups at the "Living Rare Living Stronger Forum" in 2021 which highlighted the importance of patient/doctor collaboration. NORD has helped us with multiple organizational aspects for the foundation. Their support is tremendous. They offer many resources including conferences, webinars, and programs to educate and support the rare disease community. It is a pleasure to work with their team as they are kind and passionate about the cause. Our foundation is proud to say we are members of this wonderful organization.
I’ve been volunteering with NORD as the Texas Ambassador of the Rare Action Network for over 6 years. My granddaughter Cori had Metachromatic Leukodystrophy (MLD) and passed away in 2021 at 9 years old which is why I advocate. My experience with NORD is that it is an organization that advocates for policies regarding issues rare disease patients face like drug prices, access to healthcare and clinical studies, and insurance coverage. NORD practices diversity and inclusion in its advocacy efforts. Additionally NORD helps raise awareness and education through its community and student programs. NORD plays a vital role in helping to represent the underrepresented rare community and I’m grateful to be affiliated with NORD.
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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!
I got introduced to NORD when I began working at Children's National Hospital Foundation in D.C. and the Division of Genetics and Metabolic Diseases launched a Rare Disease Institute in 2017. I have seen first-hand NORD's focus and commitment to helping patients and caregivers in a variety of ways: education, advocacy, resources, and help with access to medications, among so much more. It is one of the most impactful patient and advocacy organizations --committed to making a real difference for patients and families. I have begun to support NORD on a personal level to help them achieve their mission.
NORD is a very informative organization for all non profit’s. The American Behcet’s Disease Association relies on NORD to keep up with the Rare Disease Community and the latest information that affect not only Behçet’s disease but all Rare diseases. Nord provides opportunities for patients, caregivers and advocates to come together to be informed of latest treatments and research opportunities. Nord give patients a voice which is critical. The staff is marvelous and very helpful.
National Organization for rare disorders is a wonderful organization that does so much good for so many.
My son was diagnosed with Neurofibromatosis Type 1 when he was little and we had no idea what this meant or what information we were being provided. We turned to the NORD website for help and thank goodness we did because we not only found out more about his disease, we were also connected to other organizations and people that we were able to have many important conversations with.
We hadn't even heard of NORD before the COVID-19 pandemic but after getting some upsetting news about my husband's job, we found ourselves unable to afford medications that we really needed. We turned to NORD for help and they have been lifesavers!!
My husband called NORD a couple of months ago to ask how we allow people to make memorial donations in memory of a loved one that passed away. We were not only helped, they went above and beyond. We got a list of new donors each week that had donated and received several follow up emails beyond that. Just overall really good service.
The National organization for rare disorders has been awesome for me and my daughter!! We did not qualify for any assistance but we found the resources on the website so helpful. We will be recommending Nord again and again!!
Nord is a wonderful organization and we are so happy we found them. Wonderful people, programs, and resources.
THANK YOU!!!! You people have been amazing for our little family. When they say it takes a village, they aren't lying and we are so happy that we have NORD a part of our village.
NORD is a great organization and definitely serves the rare disease community. Without NORD, I am not sure where we would be today.
I never write any type of reviews but this one is warranted. I just want to thank everyone at nord for all of the support they provided me during my diagnosis. I was undiagnosed for decades and finally received a diagnosis that I thought all along. Nord was really there for me during this time and i am so appreciative.
I have donated to NORD since my wife passed away 15 years ago. She had MS and we didn't receive support from NORD but we did appreciate all of the great resources that were available on their website. If you are impacted by rare diseases or any diseases, reach out to NORD. They can help.
I cry when I think about writing a review of NORD. I can't begin to tell you how much this organization has done for my children who struggle with HPP. Without NORD our family would not be able to afford vital medications. Saying thank you just isnt enough.
NORD was there for me and my family when the COVID pandemic hit. They are always the first in line to support those of us who struggle with rare diseases. Thank you!!
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.
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
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!
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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!
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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 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!
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.