News from NORD

The American Academy of Neurology and American Association of Neuromuscular & Electrodiagnostic Medicine have published a guideline on the evaluation, diagnosis, and management of Facioscapulohumeral Muscular Dystrophy (FSHD). This condition can be confused with other neuromuscular disorders (such as other muscular dystrophies or polymyositis), leading to an inaccurate diagnosis and, sometimes, to unnecessary treatment. Read the guideline.

The American Academy of Neurology and American Association of Neuromuscular & Electrodiagnostic Medicine have published a guideline on the evaluation, diagnosis, and management of Facioscapulohumeral Muscular Dystrophy (FSHD). This condition can be confused with other neuromuscular disorders (such as other muscular dystrophies or polymyositis), leading to an inaccurate diagnosis and, sometimes, to unnecessary treatment. Read the guideline.

The American Academy of Neurology and American Association of Neuromuscular & Electrodiagnostic Medicine have published a guideline on the evaluation, diagnosis, and management of Facioscapulohumeral Muscular Dystrophy (FSHD). This condition can be confused with other neuromuscular disorders (such as other muscular dystrophies or polymyositis), leading to an inaccurate diagnosis and, sometimes, to unnecessary treatment. Read the guideline.

The American Academy of Neurology and American Association of Neuromuscular & Electrodiagnostic Medicine have published a guideline on the evaluation, diagnosis, and management of Facioscapulohumeral Muscular Dystrophy (FSHD). This condition can be confused with other neuromuscular disorders (such as other muscular dystrophies or polymyositis), leading to an inaccurate diagnosis and, sometimes, to unnecessary treatment. Read the guideline.

The American Academy of Neurology and American Association of Neuromuscular & Electrodiagnostic Medicine have published a guideline on the evaluation, diagnosis, and management of Facioscapulohumeral Muscular Dystrophy (FSHD). This condition can be confused with other neuromuscular disorders (such as other muscular dystrophies or polymyositis), leading to an inaccurate diagnosis and, sometimes, to unnecessary treatment. Read the guideline.

The American Academy of Neurology and American Association of Neuromuscular & Electrodiagnostic Medicine have published a guideline on the evaluation, diagnosis, and management of Facioscapulohumeral Muscular Dystrophy (FSHD). This condition can be confused with other neuromuscular disorders (such as other muscular dystrophies or polymyositis), leading to an inaccurate diagnosis and, sometimes, to unnecessary treatment. Read the guideline.

NORD President and CEO Peter L. Saltonstall issued a statement—available on the NORD website—about the appointment of Petra Kaufmann, MD, MSc, to head the NIH Office of Rare Diseases Research and Division of Clinical Innovation. Dr. Kaufmann was previously Director of the Office of Clinical Research in the National Institute of Neurological Disorders and Stroke (NINDS). Before joining NINDS, she was a tenured Associate Professor of Neurology at Columbia University. Read the NORD statement.

NORD President and CEO Peter L. Saltonstall issued a statement—available on the NORD website—about the appointment of Petra Kaufmann, MD, MSc, to head the NIH Office of Rare Diseases Research and Division of Clinical Innovation. Dr. Kaufmann was previously Director of the Office of Clinical Research in the National Institute of Neurological Disorders and Stroke (NINDS). Before joining NINDS, she was a tenured Associate Professor of Neurology at Columbia University. Read the NORD statement.

NORD President and CEO Peter L. Saltonstall issued a statement—available on the NORD website—about the appointment of Petra Kaufmann, MD, MSc, to head the NIH Office of Rare Diseases Research and Division of Clinical Innovation. Dr. Kaufmann was previously Director of the Office of Clinical Research in the National Institute of Neurological Disorders and Stroke (NINDS). Before joining NINDS, she was a tenured Associate Professor of Neurology at Columbia University. Read the NORD statement.

NORD is one of several organizations working together to sponsor a Congressional briefing on September 16 in support of the Advancing Research for Neurological Diseases Act (S.849). This bill has already passed the House as part of the 21st Century Cures Act. The briefing is advocating for its inclusion in the Senate version of this legislation, as well as a stand-alone bill.

The organizations sponsoring the briefing include the American Academy of Neurology, American Brain Coalition, Epilepsy Foundation, National Multiple Sclerosis Society, and Research America, among others.

NORD is one of several organizations working together to sponsor a Congressional briefing on September 16 in support of the Advancing Research for Neurological Diseases Act (S.849). This bill has already passed the House as part of the 21st Century Cures Act. The briefing is advocating for its inclusion in the Senate version of this legislation, as well as a stand-alone bill.

The organizations sponsoring the briefing include the American Academy of Neurology, American Brain Coalition, Epilepsy Foundation, National Multiple Sclerosis Society, and Research America, among others.

NORD is one of several organizations working together to sponsor a Congressional briefing on September 16 in support of the Advancing Research for Neurological Diseases Act (S.849). This bill has already passed the House as part of the 21st Century Cures Act. The briefing is advocating for its inclusion in the Senate version of this legislation, as well as a stand-alone bill.

The organizations sponsoring the briefing include the American Academy of Neurology, American Brain Coalition, Epilepsy Foundation, National Multiple Sclerosis Society, and Research America, among others.

NORD President and CEO Peter L. Saltonstall issued a statement—available on the NORD website—about the appointment of Petra Kaufmann, MD, MSc, to head the NIH Office of Rare Diseases Research and Division of Clinical Innovation. Dr. Kaufmann was previously Director of the Office of Clinical Research in the National Institute of Neurological Disorders and Stroke (NINDS). Before joining NINDS, she was a tenured Associate Professor of Neurology at Columbia University. Read the NORD statement.

NORD President and CEO Peter L. Saltonstall issued a statement—available on the NORD website—about the appointment of Petra Kaufmann, MD, MSc, to head the NIH Office of Rare Diseases Research and Division of Clinical Innovation. Dr. Kaufmann was previously Director of the Office of Clinical Research in the National Institute of Neurological Disorders and Stroke (NINDS). Before joining NINDS, she was a tenured Associate Professor of Neurology at Columbia University. Read the NORD statement.

NORD President and CEO Peter L. Saltonstall issued a statement—available on the NORD website—about the appointment of Petra Kaufmann, MD, MSc, to head the NIH Office of Rare Diseases Research and Division of Clinical Innovation. Dr. Kaufmann was previously Director of the Office of Clinical Research in the National Institute of Neurological Disorders and Stroke (NINDS). Before joining NINDS, she was a tenured Associate Professor of Neurology at Columbia University. Read the NORD statement.

NORD is one of several organizations working together to sponsor a Congressional briefing on September 16 in support of the Advancing Research for Neurological Diseases Act (S.849). This bill has already passed the House as part of the 21st Century Cures Act. The briefing is advocating for its inclusion in the Senate version of this legislation, as well as a stand-alone bill.

The organizations sponsoring the briefing include the American Academy of Neurology, American Brain Coalition, Epilepsy Foundation, National Multiple Sclerosis Society, and Research America, among others.

NORD is one of several organizations working together to sponsor a Congressional briefing on September 16 in support of the Advancing Research for Neurological Diseases Act (S.849). This bill has already passed the House as part of the 21st Century Cures Act. The briefing is advocating for its inclusion in the Senate version of this legislation, as well as a stand-alone bill.

The organizations sponsoring the briefing include the American Academy of Neurology, American Brain Coalition, Epilepsy Foundation, National Multiple Sclerosis Society, and Research America, among others.

NORD is one of several organizations working together to sponsor a Congressional briefing on September 16 in support of the Advancing Research for Neurological Diseases Act (S.849). This bill has already passed the House as part of the 21st Century Cures Act. The briefing is advocating for its inclusion in the Senate version of this legislation, as well as a stand-alone bill.

The organizations sponsoring the briefing include the American Academy of Neurology, American Brain Coalition, Epilepsy Foundation, National Multiple Sclerosis Society, and Research America, among others.

Physicians who are experienced in treating patients with Charcot-Marie-Tooth (CMT) syndrome and other hereditary neuropathies may register themselves on the Hereditary Neuropathy Foundation (HNF) website for possible inclusion in the HNF Directory of HCPs for patients. Those who register will also receive updates on CMT research, resources, and standards of practice. Patients seeking a healthcare provider in their area can search the directory on the Foundation’s website, based on specialty area and geographic location. September is CMT Awareness Month.

Physicians who are experienced in treating patients with Charcot-Marie-Tooth (CMT) syndrome and other hereditary neuropathies may register themselves on the Hereditary Neuropathy Foundation (HNF) website for possible inclusion in the HNF Directory of HCPs for patients. Those who register will also receive updates on CMT research, resources, and standards of practice. Patients seeking a healthcare provider in their area can search the directory on the Foundation’s website, based on specialty area and geographic location. September is CMT Awareness Month.

Physicians who are experienced in treating patients with Charcot-Marie-Tooth (CMT) syndrome and other hereditary neuropathies may register themselves on the Hereditary Neuropathy Foundation (HNF) website for possible inclusion in the HNF Directory of HCPs for patients. Those who register will also receive updates on CMT research, resources, and standards of practice. Patients seeking a healthcare provider in their area can search the directory on the Foundation’s website, based on specialty area and geographic location. September is CMT Awareness Month.

Physicians who are experienced in treating patients with Charcot-Marie-Tooth (CMT) syndrome and other hereditary neuropathies may register themselves on the Hereditary Neuropathy Foundation (HNF) website for possible inclusion in the HNF Directory of HCPs for patients. Those who register will also receive updates on CMT research, resources, and standards of practice. Patients seeking a healthcare provider in their area can search the directory on the Foundation’s website, based on specialty area and geographic location. September is CMT Awareness Month.

Physicians who are experienced in treating patients with Charcot-Marie-Tooth (CMT) syndrome and other hereditary neuropathies may register themselves on the Hereditary Neuropathy Foundation (HNF) website for possible inclusion in the HNF Directory of HCPs for patients. Those who register will also receive updates on CMT research, resources, and standards of practice. Patients seeking a healthcare provider in their area can search the directory on the Foundation’s website, based on specialty area and geographic location. September is CMT Awareness Month.

Physicians who are experienced in treating patients with Charcot-Marie-Tooth (CMT) syndrome and other hereditary neuropathies may register themselves on the Hereditary Neuropathy Foundation (HNF) website for possible inclusion in the HNF Directory of HCPs for patients. Those who register will also receive updates on CMT research, resources, and standards of practice. Patients seeking a healthcare provider in their area can search the directory on the Foundation’s website, based on specialty area and geographic location. September is CMT Awareness Month.

A new video released recently by the National Organization for Rare Disorders (NORD) is intended to promote awareness among both patients and physicians of the rare neurological disorder known as neurogenic orthostatic hypotension (nOH). This condition occurs in people with an existing disease of the brain, spinal cord, or peripheral nerves. It can be associated with Parkinson’s disease, multiple system atrophy (MSA), and pure autonomic failure (PAF).   

Patients with nOH experience a drop in blood pressure upon standing, caused by a malfunction in the autonomic nervous system. Patients frequently describe symptoms such as dizziness, lightheadedness, or fainting.

The video features patient interviews, including one with a patient treated at NYU Langone Medical Center; interviews with medical experts at Boston Medical Center and Massachusetts General Hospital; and information about resources for patients, including a NORD patient assistance program. The video may be viewed here: https://www.youtube.com/watch?v=Yu6kNqznvQU

A new video released recently by the National Organization for Rare Disorders (NORD) is intended to promote awareness among both patients and physicians of the rare neurological disorder known as neurogenic orthostatic hypotension (nOH). This condition occurs in people with an existing disease of the brain, spinal cord, or peripheral nerves. It can be associated with Parkinson’s disease, multiple system atrophy (MSA), and pure autonomic failure (PAF).   

Patients with nOH experience a drop in blood pressure upon standing, caused by a malfunction in the autonomic nervous system. Patients frequently describe symptoms such as dizziness, lightheadedness, or fainting.

The video features patient interviews, including one with a patient treated at NYU Langone Medical Center; interviews with medical experts at Boston Medical Center and Massachusetts General Hospital; and information about resources for patients, including a NORD patient assistance program. The video may be viewed here: https://www.youtube.com/watch?v=Yu6kNqznvQU

A new video released recently by the National Organization for Rare Disorders (NORD) is intended to promote awareness among both patients and physicians of the rare neurological disorder known as neurogenic orthostatic hypotension (nOH). This condition occurs in people with an existing disease of the brain, spinal cord, or peripheral nerves. It can be associated with Parkinson’s disease, multiple system atrophy (MSA), and pure autonomic failure (PAF).   

Patients with nOH experience a drop in blood pressure upon standing, caused by a malfunction in the autonomic nervous system. Patients frequently describe symptoms such as dizziness, lightheadedness, or fainting.

The video features patient interviews, including one with a patient treated at NYU Langone Medical Center; interviews with medical experts at Boston Medical Center and Massachusetts General Hospital; and information about resources for patients, including a NORD patient assistance program. The video may be viewed here: https://www.youtube.com/watch?v=Yu6kNqznvQU

A new video released recently by the National Organization for Rare Disorders (NORD) is intended to promote awareness among both patients and physicians of the rare neurological disorder known as neurogenic orthostatic hypotension (nOH). This condition occurs in people with an existing disease of the brain, spinal cord, or peripheral nerves. It can be associated with Parkinson’s disease, multiple system atrophy (MSA), and pure autonomic failure (PAF).   

Patients with nOH experience a drop in blood pressure upon standing, caused by a malfunction in the autonomic nervous system. Patients frequently describe symptoms such as dizziness, lightheadedness, or fainting.

The video features patient interviews, including one with a patient treated at NYU Langone Medical Center; interviews with medical experts at Boston Medical Center and Massachusetts General Hospital; and information about resources for patients, including a NORD patient assistance program. The video may be viewed here: https://www.youtube.com/watch?v=Yu6kNqznvQU

A new video released recently by the National Organization for Rare Disorders (NORD) is intended to promote awareness among both patients and physicians of the rare neurological disorder known as neurogenic orthostatic hypotension (nOH). This condition occurs in people with an existing disease of the brain, spinal cord, or peripheral nerves. It can be associated with Parkinson’s disease, multiple system atrophy (MSA), and pure autonomic failure (PAF).   

Patients with nOH experience a drop in blood pressure upon standing, caused by a malfunction in the autonomic nervous system. Patients frequently describe symptoms such as dizziness, lightheadedness, or fainting.

The video features patient interviews, including one with a patient treated at NYU Langone Medical Center; interviews with medical experts at Boston Medical Center and Massachusetts General Hospital; and information about resources for patients, including a NORD patient assistance program. The video may be viewed here: https://www.youtube.com/watch?v=Yu6kNqznvQU

A new video released recently by the National Organization for Rare Disorders (NORD) is intended to promote awareness among both patients and physicians of the rare neurological disorder known as neurogenic orthostatic hypotension (nOH). This condition occurs in people with an existing disease of the brain, spinal cord, or peripheral nerves. It can be associated with Parkinson’s disease, multiple system atrophy (MSA), and pure autonomic failure (PAF).   

Patients with nOH experience a drop in blood pressure upon standing, caused by a malfunction in the autonomic nervous system. Patients frequently describe symptoms such as dizziness, lightheadedness, or fainting.

The video features patient interviews, including one with a patient treated at NYU Langone Medical Center; interviews with medical experts at Boston Medical Center and Massachusetts General Hospital; and information about resources for patients, including a NORD patient assistance program. The video may be viewed here: https://www.youtube.com/watch?v=Yu6kNqznvQU