News from NORD

Join the Dup 15q Alliance and the Angelman Syndrome Research Foundation August 6-7, 2018, for world-class scientific, translational, and clinical presentations. This symposium allows for the sharing of unpublished work, which leads to conceptual discussions and helps to accelerate therapeutic opportunities for both disorders. More.

Join the Dup 15q Alliance and the Angelman Syndrome Research Foundation August 6-7, 2018, for world-class scientific, translational, and clinical presentations. This symposium allows for the sharing of unpublished work, which leads to conceptual discussions and helps to accelerate therapeutic opportunities for both disorders. More.

Join the Dup 15q Alliance and the Angelman Syndrome Research Foundation August 6-7, 2018, for world-class scientific, translational, and clinical presentations. This symposium allows for the sharing of unpublished work, which leads to conceptual discussions and helps to accelerate therapeutic opportunities for both disorders. More.

Register now for the 8th Biennial CdLS Scientific and Educational Symposium to be held in Minneapolis on June 27-28, 2018. The program will feature talks by leading researchers. To submit an abstract, contact Amy Kimball at kimballcdls@gmail.com. More.

Register now for the 8th Biennial CdLS Scientific and Educational Symposium to be held in Minneapolis on June 27-28, 2018. The program will feature talks by leading researchers. To submit an abstract, contact Amy Kimball at kimballcdls@gmail.com. More.

Register now for the 8th Biennial CdLS Scientific and Educational Symposium to be held in Minneapolis on June 27-28, 2018. The program will feature talks by leading researchers. To submit an abstract, contact Amy Kimball at kimballcdls@gmail.com. More.

The Children’s Cardiomyopathy Foundation offers a research grant program for studies focused on all forms of cardiomyopathy in children. Letters of intent are due June 13, 2018. More.

The Children’s Cardiomyopathy Foundation offers a research grant program for studies focused on all forms of cardiomyopathy in children. Letters of intent are due June 13, 2018. More.

The Children’s Cardiomyopathy Foundation offers a research grant program for studies focused on all forms of cardiomyopathy in children. Letters of intent are due June 13, 2018. 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.

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.

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.