News from NORD

An award from the Patient-Centered Outcomes Research Institute (PCORI) has made possible a special training program—in conjunction with the NORD Summit—to help rare disease patients and caregivers advance research that may ultimately impact the development of treatments. NORD and the University of Maryland School of Pharmacy are partnering on this training. For more information, see http://rarediseases.org/rare-disease-research-pcori-award-umaryland/

An award from the Patient-Centered Outcomes Research Institute (PCORI) has made possible a special training program—in conjunction with the NORD Summit—to help rare disease patients and caregivers advance research that may ultimately impact the development of treatments. NORD and the University of Maryland School of Pharmacy are partnering on this training. For more information, see http://rarediseases.org/rare-disease-research-pcori-award-umaryland/

An award from the Patient-Centered Outcomes Research Institute (PCORI) has made possible a special training program—in conjunction with the NORD Summit—to help rare disease patients and caregivers advance research that may ultimately impact the development of treatments. NORD and the University of Maryland School of Pharmacy are partnering on this training. For more information, see http://rarediseases.org/rare-disease-research-pcori-award-umaryland/

An award from the Patient-Centered Outcomes Research Institute (PCORI) has made possible a special training program—in conjunction with the NORD Summit—to help rare disease patients and caregivers advance research that may ultimately impact the development of treatments. NORD and the University of Maryland School of Pharmacy are partnering on this training. For more information, see http://rarediseases.org/rare-disease-research-pcori-award-umaryland/

An award from the Patient-Centered Outcomes Research Institute (PCORI) has made possible a special training program—in conjunction with the NORD Summit—to help rare disease patients and caregivers advance research that may ultimately impact the development of treatments. NORD and the University of Maryland School of Pharmacy are partnering on this training. For more information, see http://rarediseases.org/rare-disease-research-pcori-award-umaryland/

An award from the Patient-Centered Outcomes Research Institute (PCORI) has made possible a special training program—in conjunction with the NORD Summit—to help rare disease patients and caregivers advance research that may ultimately impact the development of treatments. NORD and the University of Maryland School of Pharmacy are partnering on this training. For more information, see http://rarediseases.org/rare-disease-research-pcori-award-umaryland/

The National Ataxia Foundation (NAF) is committed to funding the best science relevant to hereditary and sporadic types of ataxia in both basic and translational research. NAF invites research applications from US and international nonprofit and for-profit institutions. Non-US citizens are eligible to apply. For information on deadlines and applications, visit the National Ataxia Foundation website http://www.ataxia.org/research/ataxia-research-grants.aspx or contact Sue Hagen, Patient Services Director, at susan@ataxia.org.

The National Ataxia Foundation (NAF) is committed to funding the best science relevant to hereditary and sporadic types of ataxia in both basic and translational research. NAF invites research applications from US and international nonprofit and for-profit institutions. Non-US citizens are eligible to apply. For information on deadlines and applications, visit the National Ataxia Foundation website http://www.ataxia.org/research/ataxia-research-grants.aspx or contact Sue Hagen, Patient Services Director, at susan@ataxia.org.

The National Ataxia Foundation (NAF) is committed to funding the best science relevant to hereditary and sporadic types of ataxia in both basic and translational research. NAF invites research applications from US and international nonprofit and for-profit institutions. Non-US citizens are eligible to apply. For information on deadlines and applications, visit the National Ataxia Foundation website http://www.ataxia.org/research/ataxia-research-grants.aspx or contact Sue Hagen, Patient Services Director, at susan@ataxia.org.

The Vasculitis Foundation is seeking applications for grants to support pilot studies related to etiology/pathogenesis, epidemiology, diagnosis, and treatment/management of vasculitis. Proposals are due August 3. For more information, see http://www.vasculitisfoundation.org/research/research-program/

The Vasculitis Foundation is seeking applications for grants to support pilot studies related to etiology/pathogenesis, epidemiology, diagnosis, and treatment/management of vasculitis. Proposals are due August 3. For more information, see http://www.vasculitisfoundation.org/research/research-program/

The Vasculitis Foundation is seeking applications for grants to support pilot studies related to etiology/pathogenesis, epidemiology, diagnosis, and treatment/management of vasculitis. Proposals are due August 3. For more information, see http://www.vasculitisfoundation.org/research/research-program/

The National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH) is training postdoctoral researchers through fellowships sponsored by patient organizations and foundations. The researchers work directly with the patient groups and learn about the unique challenges of the diseases they are studying. For more information, see https://ncats.nih.gov/pubs/features/adst-fellows

The National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH) is training postdoctoral researchers through fellowships sponsored by patient organizations and foundations. The researchers work directly with the patient groups and learn about the unique challenges of the diseases they are studying. For more information, see https://ncats.nih.gov/pubs/features/adst-fellows

The National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH) is training postdoctoral researchers through fellowships sponsored by patient organizations and foundations. The researchers work directly with the patient groups and learn about the unique challenges of the diseases they are studying. For more information, see https://ncats.nih.gov/pubs/features/adst-fellows

NORD and BIO (the Biotechnology Innovation Organization) have released a white paper examining the impact of the Orphan Drug Tax Credit (ODTC) on the development of treatments for rare diseases. The conclusion is that one-third fewer treatments would have been developed for rare diseases over the past 30 years without the ODTC. Read the white paper: http://rarediseases.org/odtcwhitepaper/

NORD and BIO (the Biotechnology Innovation Organization) have released a white paper examining the impact of the Orphan Drug Tax Credit (ODTC) on the development of treatments for rare diseases. The conclusion is that one-third fewer treatments would have been developed for rare diseases over the past 30 years without the ODTC. Read the white paper: http://rarediseases.org/odtcwhitepaper/

NORD and BIO (the Biotechnology Innovation Organization) have released a white paper examining the impact of the Orphan Drug Tax Credit (ODTC) on the development of treatments for rare diseases. The conclusion is that one-third fewer treatments would have been developed for rare diseases over the past 30 years without the ODTC. Read the white paper: http://rarediseases.org/odtcwhitepaper/

A letter from NORD thanking the House Committee on Energy and Commerce for its leadership on the 21st Century Cures Act (H.R.6) has been signed by 200 rare disease patient organizations. The letter affirms NORD’s support for the legislation and notes specifically that the increased funding for the National Institutes of Health (NIH) and Food and Drug Administration (FDA) mandated in the legislation could “greatly improve the discovery, development, and delivery of treatments and cures” for underserved patient communities.

A letter from NORD thanking the House Committee on Energy and Commerce for its leadership on the 21st Century Cures Act (H.R.6) has been signed by 200 rare disease patient organizations. The letter affirms NORD’s support for the legislation and notes specifically that the increased funding for the National Institutes of Health (NIH) and Food and Drug Administration (FDA) mandated in the legislation could “greatly improve the discovery, development, and delivery of treatments and cures” for underserved patient communities.

A letter from NORD thanking the House Committee on Energy and Commerce for its leadership on the 21st Century Cures Act (H.R.6) has been signed by 200 rare disease patient organizations. The letter affirms NORD’s support for the legislation and notes specifically that the increased funding for the National Institutes of Health (NIH) and Food and Drug Administration (FDA) mandated in the legislation could “greatly improve the discovery, development, and delivery of treatments and cures” for underserved patient communities.

NORD and the Sjogren-Larsson Syndrome (SLS) Network Community have launched an SLS Registry to promote better understanding of the natural history of this rare syndrome and to advance research to improve the lives of patients. The registry is the third to be launched through a platform developed by NORD to serve rare disease patients and researchers. It creates a platform for SLS patients around the world to share information with researchers. For more information, see https://slsregistry.rarelaunch.org

NORD and the Sjogren-Larsson Syndrome (SLS) Network Community have launched an SLS Registry to promote better understanding of the natural history of this rare syndrome and to advance research to improve the lives of patients. The registry is the third to be launched through a platform developed by NORD to serve rare disease patients and researchers. It creates a platform for SLS patients around the world to share information with researchers. For more information, see https://slsregistry.rarelaunch.org

NORD and the Sjogren-Larsson Syndrome (SLS) Network Community have launched an SLS Registry to promote better understanding of the natural history of this rare syndrome and to advance research to improve the lives of patients. The registry is the third to be launched through a platform developed by NORD to serve rare disease patients and researchers. It creates a platform for SLS patients around the world to share information with researchers. For more information, see https://slsregistry.rarelaunch.org

Obtaining and documenting a pediatric family history will be the subject of a webinar sponsored by the New England Genetics Collaborative July 16 from noon to 1 PM EDT. Continuing medical education credit is available. The webinar will cover the importance of the pediatric family history, identifying red flags, and capturing the information in the electronic medical record. For more information, see https://cc.readytalk.com/cc/s/registrations/new?cid=eia84cjqr8dx

Obtaining and documenting a pediatric family history will be the subject of a webinar sponsored by the New England Genetics Collaborative July 16 from noon to 1 PM EDT. Continuing medical education credit is available. The webinar will cover the importance of the pediatric family history, identifying red flags, and capturing the information in the electronic medical record. For more information, see https://cc.readytalk.com/cc/s/registrations/new?cid=eia84cjqr8dx

Obtaining and documenting a pediatric family history will be the subject of a webinar sponsored by the New England Genetics Collaborative July 16 from noon to 1 PM EDT. Continuing medical education credit is available. The webinar will cover the importance of the pediatric family history, identifying red flags, and capturing the information in the electronic medical record. For more information, see https://cc.readytalk.com/cc/s/registrations/new?cid=eia84cjqr8dx

The National Organization for Rare Disorders (NORD) has posted requests for proposals (RFPs) for grants to support research on several rare diseases. July 31, 2015, will be the deadline to submit abstracts and letters of intent. The RFPs are posted on the NORD website (www.rarediseases.org). Diseases for which funding is available in this cycle are: alveolar capillary dysplasia, autoimmune polyglandular syndrome type 1, pseudomyxoma peritonei, cat eye syndrome, Creutzfeldt-Jakob disease, homocystinuria due to cystathionine beta synthase deficiency, lysosomal storage diseases, and complement-related diseases. All decisions regarding funding are made by the NORD Scientific and Medical Advisory Committee. Questions may be directed to jkraska@rarediseases.org.

The National Organization for Rare Disorders (NORD) has posted requests for proposals (RFPs) for grants to support research on several rare diseases. July 31, 2015, will be the deadline to submit abstracts and letters of intent. The RFPs are posted on the NORD website (www.rarediseases.org). Diseases for which funding is available in this cycle are: alveolar capillary dysplasia, autoimmune polyglandular syndrome type 1, pseudomyxoma peritonei, cat eye syndrome, Creutzfeldt-Jakob disease, homocystinuria due to cystathionine beta synthase deficiency, lysosomal storage diseases, and complement-related diseases. All decisions regarding funding are made by the NORD Scientific and Medical Advisory Committee. Questions may be directed to jkraska@rarediseases.org.

The National Organization for Rare Disorders (NORD) has posted requests for proposals (RFPs) for grants to support research on several rare diseases. July 31, 2015, will be the deadline to submit abstracts and letters of intent. The RFPs are posted on the NORD website (www.rarediseases.org). Diseases for which funding is available in this cycle are: alveolar capillary dysplasia, autoimmune polyglandular syndrome type 1, pseudomyxoma peritonei, cat eye syndrome, Creutzfeldt-Jakob disease, homocystinuria due to cystathionine beta synthase deficiency, lysosomal storage diseases, and complement-related diseases. All decisions regarding funding are made by the NORD Scientific and Medical Advisory Committee. Questions may be directed to jkraska@rarediseases.org.