News from NORD

The Foundation for Sarcoidosis Research has issued a press release about a survey on chronic pain, neuropathy, and medications for sarcoidosis patients. The survey provides information related to chronic pain experienced by those living with sarcoidosis and the opioid epidemic. Read the press release.

The Foundation for Sarcoidosis Research has issued a press release about a survey on chronic pain, neuropathy, and medications for sarcoidosis patients. The survey provides information related to chronic pain experienced by those living with sarcoidosis and the opioid epidemic. Read the press release.

The Foundation for Sarcoidosis Research has issued a press release about a survey on chronic pain, neuropathy, and medications for sarcoidosis patients. The survey provides information related to chronic pain experienced by those living with sarcoidosis and the opioid epidemic. Read the press release.

The John W. Walsh Translational Research Award has been granted to Joseph Kaserman, MD, Instructor of Medicine at Boston University School of Medicine and a physician in Pulmonary, Allergy, Sleep, and Critical Care Medicine at Boston Medical Center. The award was established in memory of John Walsh, co-founder of the foundation who dedicated his life to seeking a cure for alpha-1 antitrypsin deficiency. More.

The John W. Walsh Translational Research Award has been granted to Joseph Kaserman, MD, Instructor of Medicine at Boston University School of Medicine and a physician in Pulmonary, Allergy, Sleep, and Critical Care Medicine at Boston Medical Center. The award was established in memory of John Walsh, co-founder of the foundation who dedicated his life to seeking a cure for alpha-1 antitrypsin deficiency. More.

The John W. Walsh Translational Research Award has been granted to Joseph Kaserman, MD, Instructor of Medicine at Boston University School of Medicine and a physician in Pulmonary, Allergy, Sleep, and Critical Care Medicine at Boston Medical Center. The award was established in memory of John Walsh, co-founder of the foundation who dedicated his life to seeking a cure for alpha-1 antitrypsin deficiency. More.

Abstracts are currently being accepted for the Cornelia de Lange Syndrome Foundation’s 8th Biennial Scientific and Education Symposium. The meeting will take place June 27-28, 2018, in Minneapolis. Attendees include physicians in various clinical disciplines, genetic counselors, and research scientists. The meeting encourages interactions between basic and clinical scientists.

Abstracts are currently being accepted for the Cornelia de Lange Syndrome Foundation’s 8th Biennial Scientific and Education Symposium. The meeting will take place June 27-28, 2018, in Minneapolis. Attendees include physicians in various clinical disciplines, genetic counselors, and research scientists. The meeting encourages interactions between basic and clinical scientists.

Abstracts are currently being accepted for the Cornelia de Lange Syndrome Foundation’s 8th Biennial Scientific and Education Symposium. The meeting will take place June 27-28, 2018, in Minneapolis. Attendees include physicians in various clinical disciplines, genetic counselors, and research scientists. The meeting encourages interactions between basic and clinical scientists.

The National Health Council will host a free workshop in Washington, DC, for patient advocacy organizations on Feb. 15, 2018 on engaging in quality measurement and research. More.

The National Health Council will host a free workshop in Washington, DC, for patient advocacy organizations on Feb. 15, 2018 on engaging in quality measurement and research. More.

The National Health Council will host a free workshop in Washington, DC, for patient advocacy organizations on Feb. 15, 2018 on engaging in quality measurement and research. More.

Grants are available through the NORD Research Program for the study of cat eye syndrome, malonic aciduria, and post-orgasmic illness syndrome. View the RFPs here.

Grants are available through the NORD Research Program for the study of cat eye syndrome, malonic aciduria, and post-orgasmic illness syndrome. View the RFPs here.

Grants are available through the NORD Research Program for the study of cat eye syndrome, malonic aciduria, and post-orgasmic illness syndrome. View the RFPs here.

NORD has been, and will continue to be, engaged in a number of activities to protect access to quality health care coverage for Medicaid beneficiaries. Most recently, NORD has submitted comments to the Centers for Medicare and Medicaid Services (CMS) regarding Kansas’ effort to implement work requirements and a lifetime limit in its Medicaid program. Read the comments.

NORD has been, and will continue to be, engaged in a number of activities to protect access to quality health care coverage for Medicaid beneficiaries. Most recently, NORD has submitted comments to the Centers for Medicare and Medicaid Services (CMS) regarding Kansas’ effort to implement work requirements and a lifetime limit in its Medicaid program. Read the comments.

NORD has been, and will continue to be, engaged in a number of activities to protect access to quality health care coverage for Medicaid beneficiaries. Most recently, NORD has submitted comments to the Centers for Medicare and Medicaid Services (CMS) regarding Kansas’ effort to implement work requirements and a lifetime limit in its Medicaid program. Read the comments.

NORD has been advocating for the Iowa Co-pay Choice Bill (SSB 3004). This legislation would help with rising out-of-pocket costs. Specifically, SSB 3004 gives choice and co-pay predictability to Iowa families by requiring that insurance providers offer a minimum number of plans that provide a traditional co-pay option, as opposed to co-insurance. NORD will continue to advocate for this legislation throughout February.

NORD has been advocating for the Iowa Co-pay Choice Bill (SSB 3004). This legislation would help with rising out-of-pocket costs. Specifically, SSB 3004 gives choice and co-pay predictability to Iowa families by requiring that insurance providers offer a minimum number of plans that provide a traditional co-pay option, as opposed to co-insurance. NORD will continue to advocate for this legislation throughout February.

NORD has been advocating for the Iowa Co-pay Choice Bill (SSB 3004). This legislation would help with rising out-of-pocket costs. Specifically, SSB 3004 gives choice and co-pay predictability to Iowa families by requiring that insurance providers offer a minimum number of plans that provide a traditional co-pay option, as opposed to co-insurance. NORD will continue to advocate for this legislation throughout February.

NORD and 40 other patient organizations and professional societies have sent a letter to the leadership of the US House of Representatives explaining why they oppose “Right to Try” legislation currently being considered by Congress. Signers of the letter include the American Society of Clinical Oncology, Leukemia & Lymphoma Society, American Lung Association, and National Health Council. The organizations say they support patients being given access to unapproved therapies but believe the bills under consideration will not increase patient access.

NORD and 40 other patient organizations and professional societies have sent a letter to the leadership of the US House of Representatives explaining why they oppose “Right to Try” legislation currently being considered by Congress. Signers of the letter include the American Society of Clinical Oncology, Leukemia & Lymphoma Society, American Lung Association, and National Health Council. The organizations say they support patients being given access to unapproved therapies but believe the bills under consideration will not increase patient access.

NORD and 40 other patient organizations and professional societies have sent a letter to the leadership of the US House of Representatives explaining why they oppose “Right to Try” legislation currently being considered by Congress. Signers of the letter include the American Society of Clinical Oncology, Leukemia & Lymphoma Society, American Lung Association, and National Health Council. The organizations say they support patients being given access to unapproved therapies but believe the bills under consideration will not increase patient access.

On February 28, 2018, Rare Disease Day will be observed around the world. This annual observance is intended to promote awareness of the 7,000 diseases considered rare in the US, the need for research and clinical guidelines, and the challenges and opportunities for improving the quality of life for patients. Educational events are planned at numerous hospitals, universities, schools, and community centers across the US. NORD will be hosting “State House Events” with patient advocates in more than 30 states to educate state legislators on issues related to state policy. Visit the national website hosted by NORD. Visit the international website.

On February 28, 2018, Rare Disease Day will be observed around the world. This annual observance is intended to promote awareness of the 7,000 diseases considered rare in the US, the need for research and clinical guidelines, and the challenges and opportunities for improving the quality of life for patients. Educational events are planned at numerous hospitals, universities, schools, and community centers across the US. NORD will be hosting “State House Events” with patient advocates in more than 30 states to educate state legislators on issues related to state policy. Visit the national website hosted by NORD. Visit the international website.

On February 28, 2018, Rare Disease Day will be observed around the world. This annual observance is intended to promote awareness of the 7,000 diseases considered rare in the US, the need for research and clinical guidelines, and the challenges and opportunities for improving the quality of life for patients. Educational events are planned at numerous hospitals, universities, schools, and community centers across the US. NORD will be hosting “State House Events” with patient advocates in more than 30 states to educate state legislators on issues related to state policy. Visit the national website hosted by NORD. Visit the international website.

NORD Board Chair Marshall Summar, MD, of Children’s National Health System, will moderate a panel on the importance of collaborating with patient organizations in rare disease research at the annual National Institutes of Health (NIH) Rare Disease Day event on March 1, 2018. The event is open to the public and will be webcast. Other speakers will include NIH Director Francis Collins, MD, PhD; representatives of the Rare Disease Congressional Caucus; NIH researchers; and leaders of patient organizations. Topics will include gene therapy, gene editing, and engaging the next generation of the rare diseases community. For information or to register, visit the NIH web page.

NORD Board Chair Marshall Summar, MD, of Children’s National Health System, will moderate a panel on the importance of collaborating with patient organizations in rare disease research at the annual National Institutes of Health (NIH) Rare Disease Day event on March 1, 2018. The event is open to the public and will be webcast. Other speakers will include NIH Director Francis Collins, MD, PhD; representatives of the Rare Disease Congressional Caucus; NIH researchers; and leaders of patient organizations. Topics will include gene therapy, gene editing, and engaging the next generation of the rare diseases community. For information or to register, visit the NIH web page.

NORD Board Chair Marshall Summar, MD, of Children’s National Health System, will moderate a panel on the importance of collaborating with patient organizations in rare disease research at the annual National Institutes of Health (NIH) Rare Disease Day event on March 1, 2018. The event is open to the public and will be webcast. Other speakers will include NIH Director Francis Collins, MD, PhD; representatives of the Rare Disease Congressional Caucus; NIH researchers; and leaders of patient organizations. Topics will include gene therapy, gene editing, and engaging the next generation of the rare diseases community. For information or to register, visit the NIH web page.