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APFED’s 2018 Patient Education Conference for Eosinophilic Gastrointestinal Disorders (EGIDs) will take place July 6-7, 2018, in Denver. This event is presented in collaboration with Children’s Hospital Colorado and the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR). More.

APFED’s 2018 Patient Education Conference for Eosinophilic Gastrointestinal Disorders (EGIDs) will take place July 6-7, 2018, in Denver. This event is presented in collaboration with Children’s Hospital Colorado and the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR). More.

APFED’s 2018 Patient Education Conference for Eosinophilic Gastrointestinal Disorders (EGIDs) will take place July 6-7, 2018, in Denver. This event is presented in collaboration with Children’s Hospital Colorado and the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR). More.

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. 

Over the past month, NORD’s Education Department staff have updated four reports in the Rare Disease Database, which is a free resource of patient-friendly, expert-reviewed reports on rare diseases. Two new rare disease reports were published this month on NGLY1 deficiency and fatal familial insomnia.

Over the past month, NORD’s Education Department staff have updated four reports in the Rare Disease Database, which is a free resource of patient-friendly, expert-reviewed reports on rare diseases. Two new rare disease reports were published this month on NGLY1 deficiency and fatal familial insomnia.

Over the past month, NORD’s Education Department staff have updated four reports in the Rare Disease Database, which is a free resource of patient-friendly, expert-reviewed reports on rare diseases. Two new rare disease reports were published this month on NGLY1 deficiency and fatal familial insomnia.

The National Center for Advancing Translational Sciences (NCATS) of the National Institutes of Health (NIH) has developed a new toolkit for the rare disease community to facilitate therapeutics research and development. Learn more about the toolkit here.

The National Center for Advancing Translational Sciences (NCATS) of the National Institutes of Health (NIH) has developed a new toolkit for the rare disease community to facilitate therapeutics research and development. Learn more about the toolkit here.

The National Center for Advancing Translational Sciences (NCATS) of the National Institutes of Health (NIH) has developed a new toolkit for the rare disease community to facilitate therapeutics research and development. Learn more about the toolkit here.

Braving rain, wind, and frigid conditions, the Running for Rare team of marathon runners participated in the Boston Marathon on April 16, 2018, to raise funds for NORD’s assistance program to help undiagnosed patients. For the past several years, the runners have supported NORD by participating in the Boston Marathon as well as several other full- and half-marathons. Visit the runners’ web page.

Braving rain, wind, and frigid conditions, the Running for Rare team of marathon runners participated in the Boston Marathon on April 16, 2018, to raise funds for NORD’s assistance program to help undiagnosed patients. For the past several years, the runners have supported NORD by participating in the Boston Marathon as well as several other full- and half-marathons. Visit the runners’ web page.

Braving rain, wind, and frigid conditions, the Running for Rare team of marathon runners participated in the Boston Marathon on April 16, 2018, to raise funds for NORD’s assistance program to help undiagnosed patients. For the past several years, the runners have supported NORD by participating in the Boston Marathon as well as several other full- and half-marathons. Visit the runners’ web page.

NORD has joined several other patient organizations in voicing opposition to proposed expansion of short-term, limited-duration health plans. NORD and its advocacy partners believe that expanding these plans would destabilize the insurance marketplace and increase premiums for those who are in the greatest need of care. For information, view the coalition letter to Congress here and letter to the Administration here.

NORD has joined several other patient organizations in voicing opposition to proposed expansion of short-term, limited-duration health plans. NORD and its advocacy partners believe that expanding these plans would destabilize the insurance marketplace and increase premiums for those who are in the greatest need of care. For information, view the coalition letter to Congress here and letter to the Administration here.

NORD has joined several other patient organizations in voicing opposition to proposed expansion of short-term, limited-duration health plans. NORD and its advocacy partners believe that expanding these plans would destabilize the insurance marketplace and increase premiums for those who are in the greatest need of care. For information, view the coalition letter to Congress here and letter to the Administration 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.

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.