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Featured Student: Jennifer Shoskes

NORD’s Educational Initiatives team spoke with Jennifer Shoskes, a Northeastern University graduate student and NORD Student Chapter Leader. In this interview, Jennifer talks about her inspiration for starting a NORD Student Chapter and where she hopes to see her career go working within the rare disease community. For more information on NORD’s student programs, click Read more >

Join us at the 2018 NORD Rare Summit

Dear Reader, I want to invite you to join me and 700 others from the rare disease community at our annual Summit. This year, NORD’s 2018 Rare Diseases and Orphan Products Breakthrough Summit will take place October 15-16 in Washington, D.C. We expect this year’s Summit to again be the single most important gathering of Read more >

Get to know Jill Pollander, NORD’s new Director of Patient Services

Earlier this month, Jill Pollander joined NORD as Director of Patient Services. Jill has a B.S. in Nursing from Northeastern University and a M.S. in Nursing from University of Phoenix. She brings a great breadth of experience in healthcare to NORD, including working as an emergency room nurse and in long-term care, establishing a Licensed Read more >

Robert Campbell, Jr., M.D.: 2018 Lifetime Achievement Award Honoree

Dr. Robert M. Campbell, Jr. is Director of the Center for Thoracic Insufficiency Syndrome (CTIS) and an Attending Physician in the Division of Orthopaedic Surgery at Children’s Hospital of Philadelphia (CHOP). He is best known as the inventor of the Vertical Expandable Prosthetic Titanium Rib (VEPTR) device. Developed for the treatment of rare syndromes and Read more >

TAKE ACTION: Join NORD & Over 100 Patient Organizations in Supporting the RARE Act

An exciting new piece of legislation known as the RARE Act (Rare disease Advancement, Research, and Education Act) of 2018 (H.R.5115) was recently introduced by Congressmen Carson and Costello. This legislation would greatly help the rare disease community by: Increasing rare disease research funding at the National Institutes of Health (NIH) by authorizing an additional $10 million each year for Read more >

NORD Joins 125 Patient Organizations in Support of Medicaid Formulary Access

Washington, D.C., February 26, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, last week joined 125 rare disease patient organizations in sending a letter to Medicaid Directors all across the country highlighting the importance of Medicaid formulary access for rare disease patients. With Read more >

IAMRARE Registry Platform Demo, NORD Research Department-July

NORD’s IAMRARE Registry Platform is an easy to use system that allows organizations to rapidly launch a high-quality, customized registry to collect the data needed to define the natural progression of disease and advance product development. Interested in receiving a demonstration on how the system works? Attend one of our free demos hosted by NORD’s research Read more >

IAMRARE Registry Platform Demo, NORD Research Department-June

NORD’s IAMRARE Registry Platform is an easy to use system that allows organizations to rapidly launch a high-quality, customized registry to collect the data needed to define the natural progression of disease and advance product development. Interested in receiving a demonstration on how the system works? Attend one of our free demos hosted by NORD’s research Read more >

Nominations for the Rare Impact Awards Close Friday, January 12

Do you know a person or company making a difference in the fight against rare diseases? We want to hear about them! Submit a nomination for the 2018 Rare Impact Awards by this coming Friday, January 12: rarediseases.org/rare-impact-awards. In recognition of the 35th anniversaries of NORD and the Orphan Drug Act, the 2018 Rare Impact Awards will be given out in Read more >

Letter from NORD to Majority Leader Mitch McConnell and Minority Leader Chuck Schumer in support of Alex Azar’s candidacy

Washington, D.C. – January 5, 2018 – today, NORD sent the following letter to Majority Leader Mitch McConnell and Minority Leader Chuck Schumer in support of Alex Azar’s candidacy for Secretary of the Department of Health and Human Services (HHS):   Dear Senators, On behalf of the National Organization for Rare Disorders (NORD), which represents the 30 million Americans with a rare disease, I am writing Read more >

NORD Issues Statement in Response to Congressional Consideration of the Tax Cuts and Jobs Act Conference Report

Washington, D.C., December 18, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the upcoming congressional consideration of the Tax Cuts and Jobs Act Conference Report: “This week, Congress will consider and potentially pass the Tax Cuts Read more >

Join NORD & SSA in Forum on Compassionate Allowances & Rare Diseases

NORD Board Chair Marshall Summar MD will moderate a National Disability Forum on Compassionate Allowances and Rare Diseases to be hosted by the Social Security Administration (SSA) on Tuesday, Nov. 7. The event will provide a platform for rare disease patient advocates and medical experts to suggest diseases for consideration for SSA’s Compassionate Allowances list. Read more >

Patient Advocacy Organizations Outline Joint Position on Expanded Access to Experimental Drugs for Seriously Ill Patients

WASHINGTON, D.C., May 2, 2017–Seven patient advocacy organizations today laid out a joint set of principles to guide any efforts that seek to change the process of accessing unapproved therapies outside of a clinical trial, also known as compassionate use or expanded access. The patient advocacy organizations include: Alliance for Aging Research, American Cancer Society Read more >

NORD and Friends of Cancer Research Issue Joint Statement In Advance of this Week’s Congressional Hearings on FDA User Fees

Washington, D.C., March 21, 2017—The National Organization for Rare Disorders (NORD) and Friends of Cancer Research, two leading organizations that collectively represent millions of Americans with cancer and rare diseases, issued the following statement in advance of this week’s congressional hearings on the reauthorization of FDA user fees: “We wish to congratulate the Senate Committee Read more >

NORD Joins 86 Organizations to Call on Congress to Protect Medicaid

Washington, D.C., March 20, 2017 – The National Organization for Rare Disorders (NORD) and 86 other organizations issued a letter today calling on Congress to take a hard look at the likely significant and life-threatening consequences of the American Health Care Act on millions of patients. The organizations represent Americans with complex health needs who Read more >

Dr. Robert J. Desnick, MD, Ph.D – 2017 Rare Impact Award Honoree

2017 Honoree Rare Impact Award Robert J. Desnick, M.D., Ph.D. “It’s very satisfying when your research efforts lead to new diagnostics or treatment for patients suffering from rare diseases.” This is the experience of Dr. Robert J. Desnick, whose pioneering work as a researcher and clinician has improved patient care and prevented thousands of cases Read more >

Eleven Major Patient Groups Outline Joint Position on Health Care Reform

Washington, D.C., March 6, 2017 – A coalition of eleven nonpartisan patient groups today laid out a joint set of goals they want Congress to focus on as it considers changes to the Affordable Care Act. The coalition includes these organizations: American Cancer Society Cancer Action Network, American Diabetes Association, American Heart Association, American Lung Read more >

Utah Jazz vs. Brooklyn Nets

RUN is currently looking for thirty rare and undiagnosed children to make an appearance on the court with the NBA Utah Jazz during their National Anthem on Friday, March 3rd at 7:00p. This is a very blessed opportunity to raise awareness for the rare and undiagnosed community. The tickets were donated by the Utah Jazz Read more >

Join NORD and ABC News for a Rare Disease Day® Tweetchat on Feb. 28

In celebration of Rare Disease Day®, NORD will co-host a tweetchat on the topic of rare diseases with Dr. Richard Besser, Chief of the ABC News Medical/Health Unit.  The tweetchat will take place on Tuesday, Feb. 28, 2017 at 1:00 p.m. EST. This is the fourth annual tweetchat that ABC News and NORD, the U.S. host of Rare Disease Day, are co-hosting Read more >

St. Jude Rock ‘N’ Roll Nashville Marathon

Running for Rare, NORD’s signature charity marathon team, will be participating in the 2017 Nashville Marathon. Click here to apply. About the Team When you join Running for Rare, you are joining a group of individuals who are passionate and committed to an important cause. Running for Rare offers a dynamic platform for our dedicated Read more >

10th Joyce Niblack Memorial Conference on Myeloproliferative Neoplasms

The MPN Education Foundation and the Mayo Clinic invite you to attend the patient-doctor conference in Scottsdale AZ. The conference brings together medical experts in the field with MPN patients and their carers/families, to learn more about the many issues that are faced by those diagnosed with one of these disorders. Additionally, we will cover Read more >

A Group No One Applies to Join

By Elizabeth Silva Anderson, ECD Global Alliance, a NORD Member Organization An interview with Erdheim-Chester Disease patient, Janet Bunge, in honor of Erdheim Chester Disease Awareness Week (#ECDAwareness), Sept. 12-17, 2016 “I belong to ECD. A group which no one applies to join.” The spirited mother of four recounts a tale of searching, frustration, courage, and Read more >

July 13 Day of Action: Last Chance for Zika Funding

Time is running out – today may be our last chance before September for anything to happen on the critical Zika package.  This Friday, Senators will depart D.C. for their 7-week summer recess.  This is problematic because July and August in the U.S. are the worst months for mosquito and potential Zika activity. Today, July 13, Read more >

Join the Team: Running for Rare Takes on Hartford

Join us in Hartford, Conn. on October 8th!  For the first time, NORD’s charity marathon team, Running for Rare, will participate in the Eversource Hartford Marathon. We are thrilled to have the team running in the backyard of our Danbury, Conn., headquarters, and we look forward to recruiting local runners and community partners. Running for Rare is a group Read more >

RareAction Network℠ Releases May/June State Policy Legislative Tracker

RareAction continues to make strides around the country for the 1 in 10 Americans with rare diseases. In this version of the State Policy Legislative Tracker, there is an increase in the bills being supported in both Massachusetts and Tennessee. Learn more about the bills that RareAction is tracking and supporting to improve the lives of Read more >

The Myelin Project: 3rd Annual Trap Shoot Fundraiser

The Annual Trap Shoot Fundraiser is hosted by Myelin Project board member and ALD mother Diane Love and Bill Zmrzel at the Coon Creek Trap & Skeet Club in Sacramento County, California. Last year, we raised nearly $30,000 to support The Myelin Project Research Fund. The event will be a trap shooting competition with approximately Read more >

New Jersey State House Event

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media. The purpose of this event is to raise awareness at the state level for the 1 in 10 Read more >

Join NORD and ABC News for a Rare Disease Day Tweetchat on March 1

Join us for a nationwide conversation about rare diseases on: Tuesday, March 1, 2016 1:00 – 2:00 p.m. EST In celebration of Rare Disease Day®, NORD will co-sponsor a tweetchat on the topic of rare diseases with Dr. Richard Besser, Chief of the ABC News Medical/Health Unit. NORD will be live tweeting with Dr. Besser from @rarediseases and @RareDayUS (a Twitter feed dedicated to Read more >

Wall Street Journal Publishes NORD Letter to the Editor

The following Letter to the Editor by NORD President & CEO Peter L. Saltonstall appeared in the Wall Street Journal (January 2, 2016).  You read the letter online on the Wall Street Journal website. Wall Street Journal January 2, 2016 Dr. Makary urges fundamental changes in the Orphan Drug Act, alleging that some drugs developed Read more >

Liam Cruz’ Diagnostic Journey

On July 27, 2011 the Cruz family welcomed a gorgeous baby boy, Liam, to their lives. Weighing 7lbs and 19 inches long, he was born at Greenwich Hospital in Greenwich, CT and discharged with a clean bill of health. At the age of 6 months, the family began to notice that Liam was not reaching Read more >

Jill Zeigler’s Story: Life with aHUS

“I am married and have a 9-year-old daughter. They were my motivation to keep fighting and get well.” At age 28, sudden kidney failure changed Jill Zeigler’s life. After weeks spent in and out of different hospitals, Zeigler finally learned what the cause had been: an extremely rare disease called Atypical Hemolytic Uremic Syndrome (aHUS). Read more >

NORD Issues Statement on FDA Rejection of Citizen Petition

On September 10, the Food and Drug Administration (FDA) notified the National Organization for Rare Disorders (NORD) that it was rejecting NORD’s Citizen Petition submitted in 2011 to request that a documented policy be established regarding the review of potential treatments for people with rare diseases. NORD made the request in September 2011 in conjunction Read more >

Join NORD to Celebrate Rare Disease Day

In celebration of Rare Disease Day, NORD is excited to host a special event for the rare disease community that includes a screening of the new documentary, “Banner on the Moon,” about Cindy Abbott and narrated by Valerie Harper. Join us in D.C. for a reception and to see this inspiring story about love and Read more >