News from NORD

As the leading advocacy organization for the 30 million Americans with rare diseases, NORD works closely with its more than 260 member organizations representing specific rare disease communities. The NORD board has approved five additional organizations for NORD membership.

They are the Advocacy & Awareness for Immune Disorders Association; Amniotic Fluid Embolism (AFE) Foundation; Atypical HUS Foundation; HCU (Homocystinuria) Network America; and Lung Transplant Foundation.

As the leading advocacy organization for the 30 million Americans with rare diseases, NORD works closely with its more than 260 member organizations representing specific rare disease communities. The NORD board has approved five additional organizations for NORD membership.

They are the Advocacy & Awareness for Immune Disorders Association; Amniotic Fluid Embolism (AFE) Foundation; Atypical HUS Foundation; HCU (Homocystinuria) Network America; and Lung Transplant Foundation.

As the leading advocacy organization for the 30 million Americans with rare diseases, NORD works closely with its more than 260 member organizations representing specific rare disease communities. The NORD board has approved five additional organizations for NORD membership.

They are the Advocacy & Awareness for Immune Disorders Association; Amniotic Fluid Embolism (AFE) Foundation; Atypical HUS Foundation; HCU (Homocystinuria) Network America; and Lung Transplant Foundation.

In an effort to make the primary national website for clinical trial postings more user-friendly, a beta version of an updated and enhanced site is now available for public testing. Comments, questions, and suggestions on this new version are welcomed. ClinicalTrials.gov is hosted by the National Library of Medicine of the National Institutes of Health.

In an effort to make the primary national website for clinical trial postings more user-friendly, a beta version of an updated and enhanced site is now available for public testing. Comments, questions, and suggestions on this new version are welcomed. ClinicalTrials.gov is hosted by the National Library of Medicine of the National Institutes of Health.

In an effort to make the primary national website for clinical trial postings more user-friendly, a beta version of an updated and enhanced site is now available for public testing. Comments, questions, and suggestions on this new version are welcomed. ClinicalTrials.gov is hosted by the National Library of Medicine of the National Institutes of Health.

Hosted by EURORDIS, the European Conference on Rare Diseases and Orphan Products is the largest conference in Europe for the rare disease community. More than 800 stakeholders gather to discuss research, development of new treatments, health care, public health policies, and other topics. The conference will take place May 10-12, 2018. Poster abstracts are due Jan. 31.

Hosted by EURORDIS, the European Conference on Rare Diseases and Orphan Products is the largest conference in Europe for the rare disease community. More than 800 stakeholders gather to discuss research, development of new treatments, health care, public health policies, and other topics. The conference will take place May 10-12, 2018. Poster abstracts are due Jan. 31.

Hosted by EURORDIS, the European Conference on Rare Diseases and Orphan Products is the largest conference in Europe for the rare disease community. More than 800 stakeholders gather to discuss research, development of new treatments, health care, public health policies, and other topics. The conference will take place May 10-12, 2018. Poster abstracts are due Jan. 31.

NORD has reopened the call to submit abstracts and letters of intent for the following research grants. The deadline is ongoing and all US and international researchers interested in studying these diseases are encouraged to consider applying. RFPs are posted on the NORD website.

• Cat Eye Syndrome
• Malonic Aciduria
• Post-Orgasmic Illness Syndrome

NORD has reopened the call to submit abstracts and letters of intent for the following research grants. The deadline is ongoing and all US and international researchers interested in studying these diseases are encouraged to consider applying. RFPs are posted on the NORD website.

• Cat Eye Syndrome
• Malonic Aciduria
• Post-Orgasmic Illness Syndrome

NORD has reopened the call to submit abstracts and letters of intent for the following research grants. The deadline is ongoing and all US and international researchers interested in studying these diseases are encouraged to consider applying. RFPs are posted on the NORD website.

• Cat Eye Syndrome
• Malonic Aciduria
• Post-Orgasmic Illness Syndrome

Nominations are now open for the 2018 NORD Rare Impact Awards. These awards honor individuals who have made a positive impact on the rare disease community through research, patient care, advocacy, or other areas of involvement.

Awards are presented in May each year at NORD’s annual Rare Impact Celebration. Nominations may be submitted online. The deadline is January 12.

Honorees from previous years have included members of Congress, staff and senior officials from NIH and FDA, medical researchers and clinicians, patient organization leaders, and individual patients and caregivers. The awards honor those who have helped to improve the lives of those affected by rare diseases.

Nominations are now open for the 2018 NORD Rare Impact Awards. These awards honor individuals who have made a positive impact on the rare disease community through research, patient care, advocacy, or other areas of involvement.

Awards are presented in May each year at NORD’s annual Rare Impact Celebration. Nominations may be submitted online. The deadline is January 12.

Honorees from previous years have included members of Congress, staff and senior officials from NIH and FDA, medical researchers and clinicians, patient organization leaders, and individual patients and caregivers. The awards honor those who have helped to improve the lives of those affected by rare diseases.

Nominations are now open for the 2018 NORD Rare Impact Awards. These awards honor individuals who have made a positive impact on the rare disease community through research, patient care, advocacy, or other areas of involvement.

Awards are presented in May each year at NORD’s annual Rare Impact Celebration. Nominations may be submitted online. The deadline is January 12.

Honorees from previous years have included members of Congress, staff and senior officials from NIH and FDA, medical researchers and clinicians, patient organization leaders, and individual patients and caregivers. The awards honor those who have helped to improve the lives of those affected by rare diseases.

With the December 15th deadline for selecting an Affordable Care Act health plan fast approaching, NORD hosted and recorded a free public webinar that now is available online. The webinar helps patients with rare disease and caregivers navigate what can be a confusing process.

It addresses how to enroll in an insurance plan, the difference between federal and state exchanges, key dates to keep in mind, and more. Access the recording.

With the December 15th deadline for selecting an Affordable Care Act health plan fast approaching, NORD hosted and recorded a free public webinar that now is available online. The webinar helps patients with rare disease and caregivers navigate what can be a confusing process.

It addresses how to enroll in an insurance plan, the difference between federal and state exchanges, key dates to keep in mind, and more. Access the recording.

With the December 15th deadline for selecting an Affordable Care Act health plan fast approaching, NORD hosted and recorded a free public webinar that now is available online. The webinar helps patients with rare disease and caregivers navigate what can be a confusing process.

It addresses how to enroll in an insurance plan, the difference between federal and state exchanges, key dates to keep in mind, and more. Access the recording.

Through letters to Congress, policy statements, and, most recently, a rally on Capitol Hill, NORD has led a coalition of patient advocacy organizations in opposing the proposed reduction or elimination of the Orphan Drug Tax Credit (ODTC). This is one of the key financial incentives of the Orphan Drug Act, enacted in 1983, that has sparked development of lifesaving treatments for patients with rare diseases.

The tax reform bill passed by the House of Representatives would eliminate the ODTC. The legislation passed on December 2 by the Senate would greatly reduce it.

NORD and many other patient organizations feel the loss of the ODTC would significantly reduce pharmaceutical investment in rare disease research and development. In fact, a 2015 study prepared for NORD and the Biotechnology Industry Organization by Ernst & Young concluded that one-third fewer orphan products would have been developed without this incentive.

NORD has said that it considers attacks on the ODTC to be “anti-patient and anti-public health.” To follow this issue, visit NORD’s Rare Action Network website.

Through letters to Congress, policy statements, and, most recently, a rally on Capitol Hill, NORD has led a coalition of patient advocacy organizations in opposing the proposed reduction or elimination of the Orphan Drug Tax Credit (ODTC). This is one of the key financial incentives of the Orphan Drug Act, enacted in 1983, that has sparked development of lifesaving treatments for patients with rare diseases.

The tax reform bill passed by the House of Representatives would eliminate the ODTC. The legislation passed on December 2 by the Senate would greatly reduce it.

NORD and many other patient organizations feel the loss of the ODTC would significantly reduce pharmaceutical investment in rare disease research and development. In fact, a 2015 study prepared for NORD and the Biotechnology Industry Organization by Ernst & Young concluded that one-third fewer orphan products would have been developed without this incentive.

NORD has said that it considers attacks on the ODTC to be “anti-patient and anti-public health.” To follow this issue, visit NORD’s Rare Action Network website.

Through letters to Congress, policy statements, and, most recently, a rally on Capitol Hill, NORD has led a coalition of patient advocacy organizations in opposing the proposed reduction or elimination of the Orphan Drug Tax Credit (ODTC). This is one of the key financial incentives of the Orphan Drug Act, enacted in 1983, that has sparked development of lifesaving treatments for patients with rare diseases.

The tax reform bill passed by the House of Representatives would eliminate the ODTC. The legislation passed on December 2 by the Senate would greatly reduce it.

NORD and many other patient organizations feel the loss of the ODTC would significantly reduce pharmaceutical investment in rare disease research and development. In fact, a 2015 study prepared for NORD and the Biotechnology Industry Organization by Ernst & Young concluded that one-third fewer orphan products would have been developed without this incentive.

NORD has said that it considers attacks on the ODTC to be “anti-patient and anti-public health.” To follow this issue, visit NORD’s Rare Action Network website.

NORD has published a report on Li-Fraumeni syndrome in its Rare Disease Database. While primarily for patients and caregivers, the reports in this database are written or reviewed by rare disease medical experts and provide overviews on more than 1,200 rare diseases. These reports are free and available to all on NORD’s website. The Li-Fraumeni syndrome report was developed by Holly Fraumeni and Robert Lufkin DO of the Li-Fraumeni Syndrome Association.

NORD has published a report on Li-Fraumeni syndrome in its Rare Disease Database. While primarily for patients and caregivers, the reports in this database are written or reviewed by rare disease medical experts and provide overviews on more than 1,200 rare diseases. These reports are free and available to all on NORD’s website. The Li-Fraumeni syndrome report was developed by Holly Fraumeni and Robert Lufkin DO of the Li-Fraumeni Syndrome Association.

NORD has published a report on Li-Fraumeni syndrome in its Rare Disease Database. While primarily for patients and caregivers, the reports in this database are written or reviewed by rare disease medical experts and provide overviews on more than 1,200 rare diseases. These reports are free and available to all on NORD’s website. The Li-Fraumeni syndrome report was developed by Holly Fraumeni and Robert Lufkin DO of the Li-Fraumeni Syndrome Association.

To promote early diagnosis and optimal treatment for patients, NORD has published three new guides for physicians. They are The Physician Guide to Hepatocellular Carcinoma (HCC), The Physician Guide to Acute Myeloid Leukemia (AML), and The Physician Guide to Pigmented Villonodular Synovitis (PVNS).

NORD has also published corresponding reports on the three conditions for patients and their families. The physician guides and patient reports were made possible by an educational grant from Daiichi Sankyo, a global pharmaceutical company. The content of all the resources was developed by NORD and independent medical experts.

“With these conditions, as with all rare diseases, education of medical professionals and patients is extremely important,” said Marsha Lanes, MS, CGC, a genetic counselor and medical editor on the NORD staff. “NORD’s education for health care providers is intended to facilitate earlier diagnosis and optimal treatment.”

The Guide to HCC was written by Jonathan M. Schwartz, MD, Professor of Clinical Medicine, Division of Gastroenterology and Liver Diseases, Albert Einstein College of Medicine, Montefiore Medical Center. The Guide to AML was written by Amy E. DeZern, MD, MHS, Assistant Professor of Oncology and Medicine, Division of Hematologic Malignancies, Johns Hopkins Sidney Kimmel Cancer Center. The Guide to PVNS was reviewed by Tom Scharschmidt, MD, FACS, MBOE, Associate Professor, Department of Orthopedic Surgery, Ohio State University Wexner Medical Center.

The physician guides and patient reports are free and available to all on the NORD website, which receives approximately one million visits per month from patients, caregivers, medical professionals, and the public.

To promote early diagnosis and optimal treatment for patients, NORD has published three new guides for physicians. They are The Physician Guide to Hepatocellular Carcinoma (HCC), The Physician Guide to Acute Myeloid Leukemia (AML), and The Physician Guide to Pigmented Villonodular Synovitis (PVNS).

NORD has also published corresponding reports on the three conditions for patients and their families. The physician guides and patient reports were made possible by an educational grant from Daiichi Sankyo, a global pharmaceutical company. The content of all the resources was developed by NORD and independent medical experts.

“With these conditions, as with all rare diseases, education of medical professionals and patients is extremely important,” said Marsha Lanes, MS, CGC, a genetic counselor and medical editor on the NORD staff. “NORD’s education for health care providers is intended to facilitate earlier diagnosis and optimal treatment.”

The Guide to HCC was written by Jonathan M. Schwartz, MD, Professor of Clinical Medicine, Division of Gastroenterology and Liver Diseases, Albert Einstein College of Medicine, Montefiore Medical Center. The Guide to AML was written by Amy E. DeZern, MD, MHS, Assistant Professor of Oncology and Medicine, Division of Hematologic Malignancies, Johns Hopkins Sidney Kimmel Cancer Center. The Guide to PVNS was reviewed by Tom Scharschmidt, MD, FACS, MBOE, Associate Professor, Department of Orthopedic Surgery, Ohio State University Wexner Medical Center.

The physician guides and patient reports are free and available to all on the NORD website, which receives approximately one million visits per month from patients, caregivers, medical professionals, and the public.

To promote early diagnosis and optimal treatment for patients, NORD has published three new guides for physicians. They are The Physician Guide to Hepatocellular Carcinoma (HCC), The Physician Guide to Acute Myeloid Leukemia (AML), and The Physician Guide to Pigmented Villonodular Synovitis (PVNS).

NORD has also published corresponding reports on the three conditions for patients and their families. The physician guides and patient reports were made possible by an educational grant from Daiichi Sankyo, a global pharmaceutical company. The content of all the resources was developed by NORD and independent medical experts.

“With these conditions, as with all rare diseases, education of medical professionals and patients is extremely important,” said Marsha Lanes, MS, CGC, a genetic counselor and medical editor on the NORD staff. “NORD’s education for health care providers is intended to facilitate earlier diagnosis and optimal treatment.”

The Guide to HCC was written by Jonathan M. Schwartz, MD, Professor of Clinical Medicine, Division of Gastroenterology and Liver Diseases, Albert Einstein College of Medicine, Montefiore Medical Center. The Guide to AML was written by Amy E. DeZern, MD, MHS, Assistant Professor of Oncology and Medicine, Division of Hematologic Malignancies, Johns Hopkins Sidney Kimmel Cancer Center. The Guide to PVNS was reviewed by Tom Scharschmidt, MD, FACS, MBOE, Associate Professor, Department of Orthopedic Surgery, Ohio State University Wexner Medical Center.

The physician guides and patient reports are free and available to all on the NORD website, which receives approximately one million visits per month from patients, caregivers, medical professionals, and the public.

After six successful years, Ron Hollander will be stepping down as executive director of the Neuroendocrine Tumor Research Foundation. His successor will be Elyse Gellerman. More.

After six successful years, Ron Hollander will be stepping down as executive director of the Neuroendocrine Tumor Research Foundation. His successor will be Elyse Gellerman. More.

After six successful years, Ron Hollander will be stepping down as executive director of the Neuroendocrine Tumor Research Foundation. His successor will be Elyse Gellerman. More.