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30 for 30 Campaign

This year NORD is celebrating our 30th anniversary and we are humbled to be able to serve the 30 million Americans living with rare diseases every single day. We wanted to take this opportunity to share 30 ways NORD has improved the lives of people in this amazing community and how we will continue to drive progress in the future.

Thank you for your support of NORD's 30 for 30 campaign to help celebrate NORD's 30th Anniversary! You gave to support our mission, the services we provide, and progress for the entire rare disease community! NORD is honored to be the voice of rare disease patients and we look forward to serving you for the next 30 years!

Have your own reason for supporting NORD? We want to hear from you, share why you care here.

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Hope

This Thanksgiving, NORD is thankful for hope. Hope for the future of rare disease patients, their families, and the patient organizations that serve them. We never stop believing in progress and the power of patient advocacy for the rare disease community. Participate in 30 for 30 and help us turn hope into change for the one in ten Americans with a rare disease.

PROMOTE

At NORD, we understand that to promote positive change for rare disease patients and their families, we must raise awareness on all of the issues they are faced with. NORD ensures that the rare disease community, the issues rare disease patients face, and the hurdles that impede progress are visible to all. Without awareness, the rare disease community cannot realize the progress and change we all hope to achieve. Take action through 30 for 30 and ensure that awareness is spread far and wide.

Organize

NORD is proud to be the official US sponsor of Rare Disease Day. Each year we organize projects that engage hundreds of partners and ambassadors to ensure that they can raise awareness about this special day across the nation. Visit rarediseaseday.us and find out how to get involved!

Voice

NORD's voice, on behalf of the rare disease community, can be heard resonating in many places, including on NORD's blog- Rare Disease Dialog. NORD shares stories, policy updates, medical breakthroughs, industry news and other insights with our readers. Join the conversation so your voice is part of our collective dialogue.

Lead

NORD is a leading nonprofit in patient empowerment and rare disease advocacy. We serve hundred of thousands of rare disease patients each year with our variety of programs and services. We can't lead without you! Support 30 for 30 and ensure that NORD can continue to provide cutting edge patient services to the rare disease community.

CONNECT

NORD sees the importance of connecting patients in the rare disease community with others' facing the same hurdles and experiences. That is why NORD is proud to partner with EURORDIS and patient specific organizations to bring the patient community RareConnect, allowing patients around the world to connect with one another through a unique social media platform for rare disease patients. Your support of 30 for 30 allows NORD to see that more patients connect!

Progress

NORD leads the way for progress by working with industry, academic institutions, and government entities to increase access for patients and work towards the best quality outcomes. We can only move forward with you. Support progress through 30 for 30.

Community

NORD recognizes the isolation that can occur when individuals are faced with rare diseases, but NORD serves as the lynchpin of the rare disease community. Alone We Are Rare, Together We Are Strong. Together, we create a community of patients, patient advocates, physicians, patient organizations, government entities, and academic centers that care about the rare disease cause. When you support 30 for 30, you're defining a community of patients. View this video about community.

Support

NORD supports patients in each facet of navigating life with a rare disease. One such support is through provision of patient assistance programs, allowing rare disease patients to receive vital, often expensive, medical care. NORD pioneered patient assistance programs 30 years ago and is proud to have served millions of patients through our program.

Collaborate

Collaboration with EURORDIS and Japan Patients Association, allows NORD to make the rare disease cause a global one. Taking part in 30 for 30 ensures that NORD can continue to expand our breadth of collaboration further.

Advocate

NORD takes pride in being the rare disease community's biggest advocate. Our renowned policy department has played a significant role in the last 30 years advocating for what matters most to the rare disease community. Check out NORD's advocacy achievements and join 30 for 30 to ensure NORD can continue our advocacy efforts.

Educate

NORD provides education for patients, their families and patient advocates throughout the world through our rare disease database. Each of the over 1,200 disease reports is written in patient friendly language and includes information about the diagnosis, symptoms, treatments and available support systems. There are more than 7,000 rare diseases, with a contribution to 30 for 30 you can help ensure we continue to add new rare diseases to the database and continue patient education!

Empower

NORD's mission is to serve rare disease patients. We empower patients through support of patient advocacy groups, provision of educational programs, and hosting patient meetings throughout the United States. Through these services, NORD empowers rare disease patients with the resources and tools necessary to not only navigate life with a rare condition but to fight for a chance to be heard.

Prepare

Being diagnosed with a rare disorder is overwhelming for anyone, especially when a physician has no knowledge of your disease. NORD arms patients and physicians with information about rare diseases that can help increase physician's knowledge and preparation in helping their patients through their fight. Your participation in 30 for 30 ensures NORD can continue this education and preparedness across the country.

Historic

The history of NORD is tied to the passage of hallmark legislation that has served millions of patients. 30 years ago, NORD was founded by patient advocates who fought for the passage of the Orphan Drug Act. NORD has continued this legacy of premier patient advocacy and leadership in the rare disease community. Your participation in 30 for 30 shows NORD that you see value in our history of service to the rare disease community. View a video featuring today's word "Historic".

Increase

NORD represents over 200 patient organizations across the United States. Every day we work to help them increase their capacity to serve the rare disease patients they support. With a contribution to 30 for 30 you're helping NORD to increase our support to the multitude of patient organizations fighting for the rare disease cause throughout the nation.

Strengthen

NORD takes pride in being the strongest ally we can be for the rare disease community. Part of what makes NORD such a powerhouse in the community is our relationships with FDA and NIH. These strong relationships are integral in providing better access to care and funding to research. Your participation in 30 for 30 allows NORD to strengthen and grow these relationships, strengthening our influence, and in turn strengthening the rare disease cause.

Celebrate

30 years in the rare disease space is a lot to celebrate! NORD is honored by what we have been able to accomplish in the past three decades, and we are excited to continue to grow these accomplishments in service to the rare disease community. NORD asks that you celebrate with us and participate in 30 for 30. Give us another reason to celebrate!

Facilitate

NORD facilitates public access to critical resources, such as information about each state's insurance marketplace. In today's changing health landscape, information is power.  Support NORD through 30 for 30 and you're supporting rare disease patients' access to the information and resources they need. Check out NORD's website for access to a State-By-State health insurance map, information on patient assistance programs, over 1,200 articles on rare diseases in our Rare Disease Database and more!

Advance

NORD advances scientific research, technology, and the rare disease cause every day. Through close relationships with the FDA, NIH, and other academic centers, NORD advocates for the many advancements that can improve patients' lives across the country. With your support through 30 for 30, NORD will not stop advancing the rare disease patient agenda. You can bring us closer to the scientific and medical breakthroughs in the rare disease space that will change lives.

Understand

Many people do not know what it is like to live with a rare disease. NORD works to see that changed. We help to tell the stories of rare disease patients to the public understands what it means to live with a rare condition. We encourage you to share your story with NORD, with the media, and on social media. Spread understanding with NORD by joining 30 for 30 and contributing to the cause!

Honor

In this 30th anniversary year, NORD was proud to honor rare disease advocates who have contributed to the community thus far. On May 14th, NORD had the opportunity to publically honor some of these trailblazers. For vision and pioneering guidance NORD honored, Stephen C. Groft, PharmD, Marlene Haffner, MD, MPH, Lars Uno Larsson, Abbey S. Meyers, and Jess G. Thoene, MD. For leadership in public policy NORD honored William Corr, Deputy Secretary, U.S. Department of Health and Human Services, The Honorable Nancy Kassebaum (U.S. Senate, retired),  and The Honorable Henry Waxman (U.S. House of Representatives). Read more about the event.

Improve

NORD works to improve treatment options for patients by sharing information about clinical trials and encouraging research.

Innovate

In 1987, NORD established the first-ever patient assistance program dedicated to helping patients obtain medications they could not afford or that their insurance didn’t cover. In 1989, NORD established a research program to be overseen by its medical advisors so that patients and patient organizations could provide seed-grants for the study of diseases with limited or no other source of funding. NORD is here to listen to the most pressing needs of patients and patient organizations and works to find innovative ways to serve those needs.

Encourage

NORD encourages patients to raise awareness, educate others, and participate in advocacy activities. Regardless of age, individuals can contribute to our shared goals. We are always inspired by the accomplishments of the young advocates we work with, including the young advocates featured at NORD's gala.

Launch

NORD works with EURORDIS and disease specific patient organizations to launch disease specific global online communities on RareConnect. These communities help patients connect with information and each other.

Represent

NORD represents patients on Capitol Hill and at the many agencies that support rare disease patients including NIH, FDA, and SSA. NORD is actively engaged with our nation's political leaders to get the rare disease voice heard in policy and legislation. NORD participates in well-planned long-term legislation, such as FDASIA, and monitors the ever-changing policy landscape as new issues arise, such as the government shut-down. Help NORD continue to represent the patient voice in the policy arena.

Unify

NORD serves as the national hub for the rare disease community, uniting patients, government partners, researchers, industry, and investors in a focused community-wide effort to achieve progress for people affected by rare diseases. Your $30 donation will help us continue to unify the rare disease community.

Engage

NORD and its 200+ member organizations partner with many other advocacy groups on behalf of rare disease patients and families.  By donating $30, you can help us effectively engage with patients and work with leaders of the rare disease community.

Thirty

Why 30? It is NORD's 30th birthday, there are 30 million Americans living with rare diseases and we hope you will consider supporting us with a $30 donation. We will share 30 facts about rare diseases and NORD that will all answer the question, "Why NORD?". You can track each daily reason on this page.  We rely on the generous support of individuals like you. Please join us as we begin our next 30 years supporting rare disease patients!

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