News from NORD

PDSA will present the 17th annual update on immune thrombocytopenia (ITP) for patients, caregivers, and the medical community on July 28-30, 2017, in Chandler, Arizona.

PDSA will present the 17th annual update on immune thrombocytopenia (ITP) for patients, caregivers, and the medical community on July 28-30, 2017, in Chandler, Arizona.

PDSA will present the 17th annual update on immune thrombocytopenia (ITP) for patients, caregivers, and the medical community on July 28-30, 2017, in Chandler, Arizona.

In collaboration with NORD, the Organic Acidemia Association has launched an international natural history study to support research on rare organic acid disorders, which cause multiple life-threatening conditions.

In collaboration with NORD, the Organic Acidemia Association has launched an international natural history study to support research on rare organic acid disorders, which cause multiple life-threatening conditions.

In collaboration with NORD, the Organic Acidemia Association has launched an international natural history study to support research on rare organic acid disorders, which cause multiple life-threatening conditions.

September 1, 2017, is the deadline for applications for training fellowships being offered by the Wyck Foundation and Myotonic Dystrophy Foundation.

September 1, 2017, is the deadline for applications for training fellowships being offered by the Wyck Foundation and Myotonic Dystrophy Foundation.

September 1, 2017, is the deadline for applications for training fellowships being offered by the Wyck Foundation and Myotonic Dystrophy Foundation.

The Immune Deficiency Foundation would like to hear from individuals or families with a definite diagnosis of WHIM syndrome. WHIM is an acronym for some of the characteristic symptoms of the disorder – Warts, Hypogammaglobulinemia, Infections, and Myelokathexis. The foundation is seeking guidance for the development of programs and resources for those affected by this syndrome. Anyone with the diagnosis may contact IDF at [email protected].

The Immune Deficiency Foundation would like to hear from individuals or families with a definite diagnosis of WHIM syndrome. WHIM is an acronym for some of the characteristic symptoms of the disorder – Warts, Hypogammaglobulinemia, Infections, and Myelokathexis. The foundation is seeking guidance for the development of programs and resources for those affected by this syndrome. Anyone with the diagnosis may contact IDF at [email protected].

The Immune Deficiency Foundation would like to hear from individuals or families with a definite diagnosis of WHIM syndrome. WHIM is an acronym for some of the characteristic symptoms of the disorder – Warts, Hypogammaglobulinemia, Infections, and Myelokathexis. The foundation is seeking guidance for the development of programs and resources for those affected by this syndrome. Anyone with the diagnosis may contact IDF at [email protected].

On July 27-28, 2017, the DUP15q Alliance will host its 2017 Science Symposium at the Luskin Conference Center, UCLA. On July 24-26, the 9th International DUP15q Alliance Family Conference will take place at Redondo Beach, California.

On July 27-28, 2017, the DUP15q Alliance will host its 2017 Science Symposium at the Luskin Conference Center, UCLA. On July 24-26, the 9th International DUP15q Alliance Family Conference will take place at Redondo Beach, California.

On July 27-28, 2017, the DUP15q Alliance will host its 2017 Science Symposium at the Luskin Conference Center, UCLA. On July 24-26, the 9th International DUP15q Alliance Family Conference will take place at Redondo Beach, California.

The annual two-day patient conference of the Cutaneous Lymphoma Foundation will be held June 24-25, 2017, in the Los Angeles area. The event will feature clinical and non-clinical presentations.

The annual two-day patient conference of the Cutaneous Lymphoma Foundation will be held June 24-25, 2017, in the Los Angeles area. The event will feature clinical and non-clinical presentations.

The annual two-day patient conference of the Cutaneous Lymphoma Foundation will be held June 24-25, 2017, in the Los Angeles area. The event will feature clinical and non-clinical presentations.

The Children’s Cardiomyopathy Foundation is offering one-year research grants for studies focused on pediatric cardiomyopathy. Letters of intent are due June 14, 2017.

The Children’s Cardiomyopathy Foundation is offering one-year research grants for studies focused on pediatric cardiomyopathy. Letters of intent are due June 14, 2017.

The Children’s Cardiomyopathy Foundation is offering one-year research grants for studies focused on pediatric cardiomyopathy. Letters of intent are due June 14, 2017.

NIH recently hosted a workshop to bring researchers together to discuss severe drug reactions such as Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis and possible genetic factors that might predispose individuals to greater risk.

NIH recently hosted a workshop to bring researchers together to discuss severe drug reactions such as Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis and possible genetic factors that might predispose individuals to greater risk.

NIH recently hosted a workshop to bring researchers together to discuss severe drug reactions such as Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis and possible genetic factors that might predispose individuals to greater risk.

NORD’s Rare Action Network (RAN) has released a state policy legislative tracker showing state-by-state legislation that is being tracked and where RAN is taking action on issues critical to the needs of patients and families affected by rare diseases.

NORD’s Rare Action Network (RAN) has released a state policy legislative tracker showing state-by-state legislation that is being tracked and where RAN is taking action on issues critical to the needs of patients and families affected by rare diseases.

NORD’s Rare Action Network (RAN) has released a state policy legislative tracker showing state-by-state legislation that is being tracked and where RAN is taking action on issues critical to the needs of patients and families affected by rare diseases.

US and international researchers are invited to apply for NORD research grants in the 2017 funding cycle. Seven grants are available at this time for study of the following five rare diseases: alveolar capillary dysplasia with misalignment of the pulmonary veins (ACD/MPV, appendix cancer and pseudomyxoma peritonei (PMP), cat eye syndrome, malonic aciduria and post-orgasmic illness syndrome (POIS).

June 23, 2017, is the deadline to submit an initial application. See full RFPs and download abstract templates on the NORD website. In addition, information is available about other research funding being offered by NORD member organizations.

US and international researchers are invited to apply for NORD research grants in the 2017 funding cycle. Seven grants are available at this time for study of the following five rare diseases: alveolar capillary dysplasia with misalignment of the pulmonary veins (ACD/MPV, appendix cancer and pseudomyxoma peritonei (PMP), cat eye syndrome, malonic aciduria and post-orgasmic illness syndrome (POIS).

June 23, 2017, is the deadline to submit an initial application. See full RFPs and download abstract templates on the NORD website. In addition, information is available about other research funding being offered by NORD member organizations.

US and international researchers are invited to apply for NORD research grants in the 2017 funding cycle. Seven grants are available at this time for study of the following five rare diseases: alveolar capillary dysplasia with misalignment of the pulmonary veins (ACD/MPV, appendix cancer and pseudomyxoma peritonei (PMP), cat eye syndrome, malonic aciduria and post-orgasmic illness syndrome (POIS).

June 23, 2017, is the deadline to submit an initial application. See full RFPs and download abstract templates on the NORD website. In addition, information is available about other research funding being offered by NORD member organizations.