Forty Years of Firsts Starts with Putting Patients First

Dear Friends,

Today, we mark a significant milestone for the rare disease community – NORD’s 40th anniversary!

NORD’s founding is rooted in advocacy that spurred a movement when parent advocate and NORD founder, Abbey Meyers built a coalition of rare disease caregivers and support groups. Their cause became law on January 4, 1983 – the Orphan Drug Act, the world’s first legislation incentivizing drug development for rare diseases. Five months later, on May 4, 1983, their coalition established NORD - the first national nonprofit to represent all individuals and families affected by rare disease.

We’ve been making history ever since. Patients, family members, clinicians and researchers united by a single purpose—solve the greatest challenges and unmet needs in rare disease.

For 40 years, we’ve put patients and families first.

For 40 years, we’ve been a trusted steward known for our integrity and independence.

For 40 years, we’ve advanced rare disease care, treatment and research through a series of notable firsts.

A few that stand out to me include:


First Rare Disease Patient Assistance Program
At the government’s request, we developed the first rare disease patient assistance program. Every year, we’re in touch with thousands of patients and caregivers. Whether it’s helping to search for a diagnosis, specialist or clinical trials, we offer resources and connections. Annually, we provide more than $45 million dollars in support to help families pay medical bills, afford medicines, travel for care, or just take a break.

First Rare Disease Natural History Patient Registry Platform
With input from FDA and NIH, we developed the first natural history patient registry platform to serve the rare disease patient community. Today the IAMRARE patient registry platform serves more than 35 patient registries and natural history studies which are essential to conduct and advance medical research for rare diseases. In recent years, the FDA has used IAMRARE as part of its Rare Disease Cures Accelerator program to promote information sharing and help expedite the approval process for new rare disease drugs.

First NIH Office of Rare Diseases Research
We lobbied and helped launch the Office of Rare Diseases at the NIH, which was then codified as the Office of Rare Diseases Research as part of the Rare Diseases Act of 2002. This office serves as the federal focal point for rare disease biomedical research. We’ve continued to collaborate with the NIH, FDA and other governmental agencies to establish leadership positions, programs, and resources focused on rare disease and to help ensure patients, caregivers and advocates have agency professionals dedicated to their needs and interests.

First National Network of Medical Centers Dedicated to Rare Disease
We formed the first national network of medical centers dedicated to diagnosing, treating and researching all rare diseases, and training the next generation of rare disease clinicians and scientists. Together, NORD’s 40 Rare Disease Centers of Excellence are committed to providing patients and families with ease of access to world-class rare disease care and expertise. These distinguished Centers care for thousands of rare disease patients and are on the cutting edge of some of the biggest medical and scientific breakthroughs.

The Way Forward – Together, We are Reimaging a Brighter Future for Rare Disease Patients

Today, on our 40th anniversary, we celebrate 40 NORD Rare Disease Centers of Excellence – a first-of-its-kind network dedicated to diagnosing, treating and researching ALL rare diseases in the U.S.

Together, the NORD RD Centers of Excellence will build the largest clinical research network in the country, connecting the best and brightest focused on rare disease.

We’ll collect and share data, best practices, protocols, and other important information. And by doing so, we’ll be able to shorten the journey to diagnosis.

We’ll be better able to identify patients for clinical trials and other research opportunities, allowing us to help accelerate the development of new therapies. An urgent need for the thousands of rare diseases that still lack an FDA-approved treatment.

Through our Rare Disease Centers of Excellence, we’re building our way forward, paving the way for the next innovation in rare disease care and treatment. We’re building new beginnings.

I’m proud of NORD’s history, of our innovation, and our integrity. Because it’s about putting patients first. Always has. Always will. This commitment has defined our past, it shapes our future, and it will mark our legacy as we reimagine what’s possible and transform lives.

Alone we are rare. Together we are strong.

Your partner in rare disease,

President and Chief Executive Officer

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40 Years of Impact, Driven by Patients

In the late 1970s, Abbey S. Meyers was a working mom from Connecticut on a mission to find treatments for her son with Tourette’s syndrome. She assumed she wasn’t the only parent waging such a battle for their child, and she was right. She ended up becoming the mother of a movement.

Abbey formed the coalition of patient advocates who championed the enactment of the Orphan Drug Act in 1983, the world’s first law incentivizing drug development for rare diseases. Before the Orphan Drug Act, there were fewer than 40 drugs developed to treat rare diseases; today, more than 600 treatments have been approved by the FDA.

Later that same year, on May 4, 1983, this coalition of patients and caregivers established the National Organization for Rare Disorders (NORD) to act as a unified voice representing all Americans with rare diseases, with Abbey as its first President and CEO. It was the first national nonprofit dedicated to rare disease advocacy.

This is the foundation upon which we continue our work for the more than 25 million Americans with living rare diseases today. Explore the milestones that have transformed rare disease patient care, research, and policy below – and celebrate that you, too, are part of this story.

Scroll to explore NORD’s 40-year history and major milestones that shaped the rare disease community:

Ways to Get Involved
As we boldly reimagine the future, we invite you to join us in shaping what is possible for yourself, your loved ones, and the entire community affected by rare disease.

Join Us

Volunteer with NORD or attend an in-person or virtual event this year. From raising awareness to advocating for state and federal policies, there are options for everyone – including organizations seeking to become members.

Get Involved

Share Your Story

Join the individuals and families in the NORD community who have contributed their personal accounts of living with rare diseases. Help us shine a light on rare diseases by voicing your journey for others. Alone we are rare. Together we are strong!

Share Story

Ways to Give

You can support the rare disease community by starting a fundraiser to support NORD or by making your own gift today. All support helps improve the quality of life and access to education and care for our rare disease community members. 

Donate Today

Let’s Continue to Reimagine A Brighter Future

Forty years of patient advocacy has taught us that not only is our collective voice influential, every person in the rare community has the ability to shape the future and make a lasting impact.

As NORD continues our mission to improve the lives of millions living with a rare disease, we are asking YOU – our community members, partners and colleagues, to help us better understand what would make a difference in your rare journey. Share your story, your successes, and help us define what everyday progress means to you.

Click here to add your message to the wall.

Hover and click below to read our community members’ submissions!


Jeron Hill

More access to treatment and resources for patients who are new to the community and...

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Sam Curtis

I’d rather focus on the rare disease community than focus on my own rare condition...

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Stephanie Levin

I was diagnosed with Pompe Disease in February 2021. I’ve probably been symptomatic for about...

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Megan Davis

For physicians to be educated on scleroderma. We are not lazy, crazy, seeking attention! We...

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Sarah Foye

I envision a future where people with rare muscle disorders like titinopathy (caused by disease-causing...

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Cristina Rosa

I am an advocate for legislation pertaining to rare diseases and the parent of Juju,...

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Lisa Zaret

I would like more attention called to West Nile virus and the rarest manifestation, meningoencephalitis.

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Kala McWain

Better mental and psychosocial support for caregivers.

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Julie Garza

Mask mandates in all medical settings would make an enormous difference to immunosuppressed patients.

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Karen Quandt

The price of rare disease drugs is extremely high. How do we fix this problem?

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Hopefully government and private sources will soon have designated funds to help cure Rare Diseases.

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Amy Chapman

I wish for every rare person to have a medication or a cure.

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Jenni Ward

I would like to see a change in how our Social Security Administration evaluates disability.

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Rebekah Palmer

A big difference to me would be more assistance in occupation as an adult living...

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Kim Madden

Rare disease research should be a relay race where we're all carrying the same baton.

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Megan Freeman

I would love to see if there could be another clinical trial done for my...

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Ruth Hochheiser

Education of the medical community about Orthostatic Tremor, including primary care physicians and neurologists.

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Christine McGarvey

Streamline the diagnostic odyssey by improving awareness of rare diseases among the medical community.

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Raymond A Huml

I want more robust incentives for companies developing rare disease drugs, especially for ultra-rare diseases.

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Alicia Dwyer

I have Susac Syndrome. We need research, as not one organization is doing it.

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Tytina Sanders-Bey

Access to care and treatment for specific health challenges. Easier access to prescription medication. Perhaps...

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Tammy Jones

My vision is to make connections with Rare Patients, one way I believe I can...

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Lesley Bennett

Expand Newborn Screening (including rare epilepsies) and establish Rare Disease Advisory Councils in every state.

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Sofia Horan

I hope to tell more patients that there is a treatment and there is hope.

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Jhoanny Cardenas

It would be wonderful if there was more focus on Rare Diseases for medical students.

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Cindy Choudhary

I would reimagine a healthcare system that could help treat my illnesses and actually listen.

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Jeneva Stone

I am hopeful that Maryland, my state, will establish a Rare Disease Advisory Council this...

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Janet Wilson

If there’s a way for more families with the same genetic results to submit to...

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Kerri Engebrecht

My passion and my plea is for mental health care to be looked at seriously...

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Alone We Are Rare. Together We Are Strong.®

National Organization for Rare Disorders