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Register now for the inaugural Speaking of NEC: Unplugged on June 11, 2018, in Cromwell Connecticut, a one-day regional conference focused on reducing the devastating effects of necrotizing enterocolitis (NEC) on premature infants and their families. More. 

Register now for the inaugural Speaking of NEC: Unplugged on June 11, 2018, in Cromwell Connecticut, a one-day regional conference focused on reducing the devastating effects of necrotizing enterocolitis (NEC) on premature infants and their families. More. 

Register now for the inaugural Speaking of NEC: Unplugged on June 11, 2018, in Cromwell Connecticut, a one-day regional conference focused on reducing the devastating effects of necrotizing enterocolitis (NEC) on premature infants and their families. More. 

Join the MDS Foundation for a Patient and Family/Caregiver forum on May 5, 2018, in Salt Lake City. This one-day forum provides new patients, long-term survivors, and caregivers the opportunity to learn from experts about treatments and strategies for living with MDS. More.

Join the MDS Foundation for a Patient and Family/Caregiver forum on May 5, 2018, in Salt Lake City. This one-day forum provides new patients, long-term survivors, and caregivers the opportunity to learn from experts about treatments and strategies for living with MDS. More.

Join the MDS Foundation for a Patient and Family/Caregiver forum on May 5, 2018, in Salt Lake City. This one-day forum provides new patients, long-term survivors, and caregivers the opportunity to learn from experts about treatments and strategies for living with MDS. More.

In May 2018, the IPPF will bring together pemphigus and pemphigoid patients, clinicians, researchers, and industry partners to focus on ongoing or future clinical trials and their underlying science. This will take place prior to the International Investigative Dermatology meeting in Orlando. More.

In May 2018, the IPPF will bring together pemphigus and pemphigoid patients, clinicians, researchers, and industry partners to focus on ongoing or future clinical trials and their underlying science. This will take place prior to the International Investigative Dermatology meeting in Orlando. More.

In May 2018, the IPPF will bring together pemphigus and pemphigoid patients, clinicians, researchers, and industry partners to focus on ongoing or future clinical trials and their underlying science. This will take place prior to the International Investigative Dermatology meeting in Orlando. 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.

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.