News from NORD

The First International Symposium on PSP and CBD will take place in London Oct. 25-26, 2018, in conjunction with CurePSP and the PSP Association. The latest research updates will be shared through scientific and clinical presentations and poster sessions. View a draft agenda and register now. CurePSP sponsors and organizes family conferences around the US, providing opportunities to learn more about PSP, CBD, and MSA. Join CurePSP and the Mayo Clinic in Rochester, MD, on June 29-30, 2018. More.  

The First International Symposium on PSP and CBD will take place in London Oct. 25-26, 2018, in conjunction with CurePSP and the PSP Association. The latest research updates will be shared through scientific and clinical presentations and poster sessions. View a draft agenda and register now. CurePSP sponsors and organizes family conferences around the US, providing opportunities to learn more about PSP, CBD, and MSA. Join CurePSP and the Mayo Clinic in Rochester, MD, on June 29-30, 2018. More.  

The First International Symposium on PSP and CBD will take place in London Oct. 25-26, 2018, in conjunction with CurePSP and the PSP Association. The latest research updates will be shared through scientific and clinical presentations and poster sessions. View a draft agenda and register now. CurePSP sponsors and organizes family conferences around the US, providing opportunities to learn more about PSP, CBD, and MSA. Join CurePSP and the Mayo Clinic in Rochester, MD, on June 29-30, 2018. 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. 

AAMDSIF will be hosting seven “Living with Aplastic Anemia, MDS, PNH” patient and family conferences in cities around the country this year. Each free event offers opportunities to learn from leading medical experts and to connect with other patients and caregivers. More.

AAMDSIF will be hosting seven “Living with Aplastic Anemia, MDS, PNH” patient and family conferences in cities around the country this year. Each free event offers opportunities to learn from leading medical experts and to connect with other patients and caregivers. More.

AAMDSIF will be hosting seven “Living with Aplastic Anemia, MDS, PNH” patient and family conferences in cities around the country this year. Each free event offers opportunities to learn from leading medical experts and to connect with other patients and caregivers. 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.

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.