News from NORD

As part of the Patients and Providers for Medical Nutrition Equity Coalition, NORD will participate in an advocacy day on Capitol Hill in Washington, DC, on Friday, June 1, 2018, in support of the Medical Nutrition Equity Act (H.R.2587, S.1194). This legislation would require the coverage of medical nutrition in Medicaid, Medicare, the Federal Employee Health Benefit Plan, and certain private insurance. For information on the Medical Nutrition Equity Act, view the coalition letter here.

As part of the Patients and Providers for Medical Nutrition Equity Coalition, NORD will participate in an advocacy day on Capitol Hill in Washington, DC, on Friday, June 1, 2018, in support of the Medical Nutrition Equity Act (H.R.2587, S.1194). This legislation would require the coverage of medical nutrition in Medicaid, Medicare, the Federal Employee Health Benefit Plan, and certain private insurance. For information on the Medical Nutrition Equity Act, view the coalition letter here.

As part of the Patients and Providers for Medical Nutrition Equity Coalition, NORD will participate in an advocacy day on Capitol Hill in Washington, DC, on Friday, June 1, 2018, in support of the Medical Nutrition Equity Act (H.R.2587, S.1194). This legislation would require the coverage of medical nutrition in Medicaid, Medicare, the Federal Employee Health Benefit Plan, and certain private insurance. For information on the Medical Nutrition Equity Act, view the coalition letter here.

NORD has sent a letter to Congress, signed by more than 100 patient advocacy organizations, in support of the Rare Disease Advancement, Research, and Education Act of 2018 (H.R.5115) or the “RARE Act of 2018.” Read NORD’s letter to see how this proposed legislation would help patients and families affected by rare diseases, medical researchers, and clinicians seeking to provide optimal care for their patients. 

NORD has sent a letter to Congress, signed by more than 100 patient advocacy organizations, in support of the Rare Disease Advancement, Research, and Education Act of 2018 (H.R.5115) or the “RARE Act of 2018.” Read NORD’s letter to see how this proposed legislation would help patients and families affected by rare diseases, medical researchers, and clinicians seeking to provide optimal care for their patients. 

NORD has sent a letter to Congress, signed by more than 100 patient advocacy organizations, in support of the Rare Disease Advancement, Research, and Education Act of 2018 (H.R.5115) or the “RARE Act of 2018.” Read NORD’s letter to see how this proposed legislation would help patients and families affected by rare diseases, medical researchers, and clinicians seeking to provide optimal care for their patients. 

NORD’s Research Grant Program is still accepting proposals for the study of three rare diseases: cat eye syndrome, malonic aciduria, and post-orgasmic illness syndrome. All interested US and international researchers are encouraged to apply. Learn more.

NORD’s Research Grant Program is still accepting proposals for the study of three rare diseases: cat eye syndrome, malonic aciduria, and post-orgasmic illness syndrome. All interested US and international researchers are encouraged to apply. Learn more.

NORD’s Research Grant Program is still accepting proposals for the study of three rare diseases: cat eye syndrome, malonic aciduria, and post-orgasmic illness syndrome. All interested US and international researchers are encouraged to apply. Learn more.

In January of 1983, President Ronald Reagan signed the Orphan Drug Act, launching a new era of hope for the millions of Americans with diseases so rare that no pharmaceutical company was pursuing development of treatments. A few months later, the patient advocates who had worked together to get that law enacted formally announced their collaboration as the National Organization for Rare Disorders (NORD), to provide advocacy, education, research, and patient services on behalf of all people affected by rare diseases. Throughout 2018, NORD and others in the rare disease community will be celebrating this 35th anniversary year. While only a dozen rare disease treatments had been developed by industry in the decade before 1983, more than 500 have been approved by FDA since then and many more are in the pipeline. Many of these are breakthrough therapies that have been life-saving, or have significantly improved quality of life, for patients who previously had no therapy. View archived video from 30th anniversary about the role of patient advocates in enactment of the Orphan Drug Act.

In January of 1983, President Ronald Reagan signed the Orphan Drug Act, launching a new era of hope for the millions of Americans with diseases so rare that no pharmaceutical company was pursuing development of treatments. A few months later, the patient advocates who had worked together to get that law enacted formally announced their collaboration as the National Organization for Rare Disorders (NORD), to provide advocacy, education, research, and patient services on behalf of all people affected by rare diseases. Throughout 2018, NORD and others in the rare disease community will be celebrating this 35th anniversary year. While only a dozen rare disease treatments had been developed by industry in the decade before 1983, more than 500 have been approved by FDA since then and many more are in the pipeline. Many of these are breakthrough therapies that have been life-saving, or have significantly improved quality of life, for patients who previously had no therapy. View archived video from 30th anniversary about the role of patient advocates in enactment of the Orphan Drug Act.

In January of 1983, President Ronald Reagan signed the Orphan Drug Act, launching a new era of hope for the millions of Americans with diseases so rare that no pharmaceutical company was pursuing development of treatments. A few months later, the patient advocates who had worked together to get that law enacted formally announced their collaboration as the National Organization for Rare Disorders (NORD), to provide advocacy, education, research, and patient services on behalf of all people affected by rare diseases. Throughout 2018, NORD and others in the rare disease community will be celebrating this 35th anniversary year. While only a dozen rare disease treatments had been developed by industry in the decade before 1983, more than 500 have been approved by FDA since then and many more are in the pipeline. Many of these are breakthrough therapies that have been life-saving, or have significantly improved quality of life, for patients who previously had no therapy. View archived video from 30th anniversary about the role of patient advocates in enactment of the Orphan Drug Act.

On Thursday, May 17, 2018, NORD will honor clinicians, researchers, patient advocates, and others who have made outstanding contributions to improving the lives of people with rare diseases. This will take place at the Rare Impact Awards event, which takes place each year at this time in Washington, DC. This year, the venue will be the Andrew W. Mellon Auditorium. Individuals being honored include Robert Campbell, MD, of Children’s Hospital of Philadelphia, who is receiving a Lifetime Achievement Award; Richard Pazdur, MD, of the FDA, who is receiving the Public Health Leadership Award; and Elisabeth Dykens, PhD, of Vanderbilt University, who is being honored for her research related to rare genetic syndromes. Read about all the honorees.

The Rare Impact Awards Celebration is open to the public. Registration is open now on the NORD website. 

On Thursday, May 17, 2018, NORD will honor clinicians, researchers, patient advocates, and others who have made outstanding contributions to improving the lives of people with rare diseases. This will take place at the Rare Impact Awards event, which takes place each year at this time in Washington, DC. This year, the venue will be the Andrew W. Mellon Auditorium. Individuals being honored include Robert Campbell, MD, of Children’s Hospital of Philadelphia, who is receiving a Lifetime Achievement Award; Richard Pazdur, MD, of the FDA, who is receiving the Public Health Leadership Award; and Elisabeth Dykens, PhD, of Vanderbilt University, who is being honored for her research related to rare genetic syndromes. Read about all the honorees.

The Rare Impact Awards Celebration is open to the public. Registration is open now on the NORD website. 

On Thursday, May 17, 2018, NORD will honor clinicians, researchers, patient advocates, and others who have made outstanding contributions to improving the lives of people with rare diseases. This will take place at the Rare Impact Awards event, which takes place each year at this time in Washington, DC. This year, the venue will be the Andrew W. Mellon Auditorium. Individuals being honored include Robert Campbell, MD, of Children’s Hospital of Philadelphia, who is receiving a Lifetime Achievement Award; Richard Pazdur, MD, of the FDA, who is receiving the Public Health Leadership Award; and Elisabeth Dykens, PhD, of Vanderbilt University, who is being honored for her research related to rare genetic syndromes. Read about all the honorees.

The Rare Impact Awards Celebration is open to the public. Registration is open now on the NORD website. 

The 9th International Scientific Workshop of the Progeria Research Foundation will take place September 20-22, 2018, in Cambridge, Massachusetts. This event promotes collaboration among basic and clinical scientists toward progress in progeria, cardiovascular disease, and aging research. Information and registration.

The 9th International Scientific Workshop of the Progeria Research Foundation will take place September 20-22, 2018, in Cambridge, Massachusetts. This event promotes collaboration among basic and clinical scientists toward progress in progeria, cardiovascular disease, and aging research. Information and registration.

The 9th International Scientific Workshop of the Progeria Research Foundation will take place September 20-22, 2018, in Cambridge, Massachusetts. This event promotes collaboration among basic and clinical scientists toward progress in progeria, cardiovascular disease, and aging research. Information and registration.

July 13-15, 2018, will be the dates of the biennial conference of the Osteogenesis Imperfecta Foundation. To take place in Baltimore, the program will feature forums with leading experts, practical living advice and research.

July 13-15, 2018, will be the dates of the biennial conference of the Osteogenesis Imperfecta Foundation. To take place in Baltimore, the program will feature forums with leading experts, practical living advice and research.

July 13-15, 2018, will be the dates of the biennial conference of the Osteogenesis Imperfecta Foundation. To take place in Baltimore, the program will feature forums with leading experts, practical living advice and research.

The Morgan Leary Vaughn Fund Inc. is hosting a one-day regional conference in Cromwell, Connecticut, on June 11, 2018, on reducing the devastating effects of necrotizing enterocolitis on premature infants and their families. Online registration is open now for “Speaking of NEC: Unplugged.”

The Morgan Leary Vaughn Fund Inc. is hosting a one-day regional conference in Cromwell, Connecticut, on June 11, 2018, on reducing the devastating effects of necrotizing enterocolitis on premature infants and their families. Online registration is open now for “Speaking of NEC: Unplugged.”

The Morgan Leary Vaughn Fund Inc. is hosting a one-day regional conference in Cromwell, Connecticut, on June 11, 2018, on reducing the devastating effects of necrotizing enterocolitis on premature infants and their families. Online registration is open now for “Speaking of NEC: Unplugged.”

The MDS Foundation hosts forums at locations around the U.S. for newly diagnosed patients, long-term survivors, or caregivers affected by myelodysplastic syndromes. Medical experts present information on treatment options and strategies for living with MDS. View the dates and locations.

The MDS Foundation hosts forums at locations around the U.S. for newly diagnosed patients, long-term survivors, or caregivers affected by myelodysplastic syndromes. Medical experts present information on treatment options and strategies for living with MDS. View the dates and locations.

The MDS Foundation hosts forums at locations around the U.S. for newly diagnosed patients, long-term survivors, or caregivers affected by myelodysplastic syndromes. Medical experts present information on treatment options and strategies for living with MDS. View the dates and locations.

The Jack McGovern Coats’ Disease Foundation has established a national tissue biobank at the Wilmer Eye Institute of Johns Hopkins Medicine to facilitate research on the causes of, and most effective treatments for, Coats’ disease. This rare disorder affects the retina and has been diagnosed in children as young as four months. More.

The Jack McGovern Coats’ Disease Foundation has established a national tissue biobank at the Wilmer Eye Institute of Johns Hopkins Medicine to facilitate research on the causes of, and most effective treatments for, Coats’ disease. This rare disorder affects the retina and has been diagnosed in children as young as four months. More.

The Jack McGovern Coats’ Disease Foundation has established a national tissue biobank at the Wilmer Eye Institute of Johns Hopkins Medicine to facilitate research on the causes of, and most effective treatments for, Coats’ disease. This rare disorder affects the retina and has been diagnosed in children as young as four months. More.