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American Partnership for Eosinophilic Disorders is Accepting Grant Applications
The American Partnership for Eosinophilic Disorders (APFED) is accepting applications for 2016 APFED Hope Pilot Grants. These grants were established to allow investigators from a variety of disciplines to initiate new projects relevant to eosinophil-associated diseases. For more information, see http://apfed.org/research/grant-application-for-researchers/
The American Partnership for Eosinophilic Disorders (APFED) is accepting applications for 2016 APFED Hope Pilot Grants. These grants were established to allow investigators from a variety of disciplines to initiate new projects relevant to eosinophil-associated diseases. For more information, see http://apfed.org/research/grant-application-for-researchers/
The American Partnership for Eosinophilic Disorders (APFED) is accepting applications for 2016 APFED Hope Pilot Grants. These grants were established to allow investigators from a variety of disciplines to initiate new projects relevant to eosinophil-associated diseases. For more information, see http://apfed.org/research/grant-application-for-researchers/
Alpha-1 Foundation Announces Funding Opportunities
The Alpha-1 Foundation has announced its funding opportunities for the 2015–2016 grants cycle. Sept. 18th is the deadline for letters of intent. For more information, see http://www.alpha1.org/Investigators/Grants/Grant-Opportunities
The Alpha-1 Foundation has announced its funding opportunities for the 2015–2016 grants cycle. Sept. 18th is the deadline for letters of intent. For more information, see http://www.alpha1.org/Investigators/Grants/Grant-Opportunities
The Alpha-1 Foundation has announced its funding opportunities for the 2015–2016 grants cycle. Sept. 18th is the deadline for letters of intent. For more information, see http://www.alpha1.org/Investigators/Grants/Grant-Opportunities
American Society of Human Genetics (ASHG) Issues Position Paper on Genetic Testing in Children and Adolescents
The ASHG has issued a statement for families, clinicians, and investigators on the ethical, legal, and social issues concerning genetic testing in children. Points to consider are offered on a broad range of test technologies and their applications in clinical medicine and research, including predictive testing for high-risk families, genome sequencing, carrier testing, direct-to-consumer testing, pharmacogenomics testing, and newborn screening. Recommendations are also made for communication and recording of results and education of healthcare providers.
The ASHG has issued a statement for families, clinicians, and investigators on the ethical, legal, and social issues concerning genetic testing in children. Points to consider are offered on a broad range of test technologies and their applications in clinical medicine and research, including predictive testing for high-risk families, genome sequencing, carrier testing, direct-to-consumer testing, pharmacogenomics testing, and newborn screening. Recommendations are also made for communication and recording of results and education of healthcare providers.
The ASHG has issued a statement for families, clinicians, and investigators on the ethical, legal, and social issues concerning genetic testing in children. Points to consider are offered on a broad range of test technologies and their applications in clinical medicine and research, including predictive testing for high-risk families, genome sequencing, carrier testing, direct-to-consumer testing, pharmacogenomics testing, and newborn screening. Recommendations are also made for communication and recording of results and education of healthcare providers.
Updated Clinical Guidelines for Hereditary Diffuse Gastric Cancer Emphasize Identification of CDH1 Gene Mutation Carriers
A multidisciplinary workshop resulted in the development of these new guidelines that include revised CDH1 testing criteria. For more information, see http://www.nostomachforcancer.org/wp-content/uploads/2015/06/IGCLC-guideline-2015_JMG.pdf
A multidisciplinary workshop resulted in the development of these new guidelines that include revised CDH1 testing criteria. For more information, see http://www.nostomachforcancer.org/wp-content/uploads/2015/06/IGCLC-guideline-2015_JMG.pdf
A multidisciplinary workshop resulted in the development of these new guidelines that include revised CDH1 testing criteria. For more information, see http://www.nostomachforcancer.org/wp-content/uploads/2015/06/IGCLC-guideline-2015_JMG.pdf
FDA Publishes Final Rule Regarding Potential Drug Shortages
As mandated in the FDA Safety and Innovation Act (FDASIA), the FDA has published a final rule requiring all manufacturers of certain medically important drug and biologic products to give the FDA early notification of potential drug shortages and to report the reasons for potential shortages. Acting FDA Commissioner Stephen Ostroff, MD, wrote about this and other milestones in the implementation of the law, in a recent blog. http://blogs.fda.gov/fdavoice/index.php/2015/07/celebrating-the-3rd-anniversary-of-the-fda-safety-and-innovation-act/
As mandated in the FDA Safety and Innovation Act (FDASIA), the FDA has published a final rule requiring all manufacturers of certain medically important drug and biologic products to give the FDA early notification of potential drug shortages and to report the reasons for potential shortages. Acting FDA Commissioner Stephen Ostroff, MD, wrote about this and other milestones in the implementation of the law, in a recent blog. http://blogs.fda.gov/fdavoice/index.php/2015/07/celebrating-the-3rd-anniversary-of-the-fda-safety-and-innovation-act/
As mandated in the FDA Safety and Innovation Act (FDASIA), the FDA has published a final rule requiring all manufacturers of certain medically important drug and biologic products to give the FDA early notification of potential drug shortages and to report the reasons for potential shortages. Acting FDA Commissioner Stephen Ostroff, MD, wrote about this and other milestones in the implementation of the law, in a recent blog. http://blogs.fda.gov/fdavoice/index.php/2015/07/celebrating-the-3rd-anniversary-of-the-fda-safety-and-innovation-act/
Foundations Award Funding for Study of Alport Syndrome
The Alport Syndrome Foundation (ASF), Pedersen Family Foundation, and Kidney Foundation of Canada have awarded two research grants for the study of Alport syndrome, a rare genetic kidney disease. The recipients are James Scholey, MD, of the University of Toronto for “Drug Repurposing for the Treatment of Alport Syndrome” and Jeffrey Miner, MD, of Washington University for “WISE Antibody as a Treatment for Alport Syndrome.”
Alport syndrome causes kidney failure, hearing loss, and vision abnormalities. Most affected boys experience kidney failure by the time they reach their early 20s. For affected girls, disease progression often occurs later. There is currently no treatment to prevent kidney failure but early diagnosis is essential as there are medications to delay progression of the disease.
The Alport Syndrome Foundation (ASF), Pedersen Family Foundation, and Kidney Foundation of Canada have awarded two research grants for the study of Alport syndrome, a rare genetic kidney disease. The recipients are James Scholey, MD, of the University of Toronto for “Drug Repurposing for the Treatment of Alport Syndrome” and Jeffrey Miner, MD, of Washington University for “WISE Antibody as a Treatment for Alport Syndrome.”
Alport syndrome causes kidney failure, hearing loss, and vision abnormalities. Most affected boys experience kidney failure by the time they reach their early 20s. For affected girls, disease progression often occurs later. There is currently no treatment to prevent kidney failure but early diagnosis is essential as there are medications to delay progression of the disease.
The Alport Syndrome Foundation (ASF), Pedersen Family Foundation, and Kidney Foundation of Canada have awarded two research grants for the study of Alport syndrome, a rare genetic kidney disease. The recipients are James Scholey, MD, of the University of Toronto for “Drug Repurposing for the Treatment of Alport Syndrome” and Jeffrey Miner, MD, of Washington University for “WISE Antibody as a Treatment for Alport Syndrome.”
Alport syndrome causes kidney failure, hearing loss, and vision abnormalities. Most affected boys experience kidney failure by the time they reach their early 20s. For affected girls, disease progression often occurs later. There is currently no treatment to prevent kidney failure but early diagnosis is essential as there are medications to delay progression of the disease.
ACMG Provides Recommendations on Genetic Testing
The American College of Medical Genetics and Genomics (ACMG) has released a list of five things patients and providers should discuss regarding specific genetic tests. The list was developed with input from committees involved in developing clinical practice guidelines and laboratory technical standards and guidelines. It is part of a “Choosing Wisely” campaign of ACMG. For more information, see http://www.choosingwisely.org/societies/american-college-of-medical-genetics-and-genomics/
The American College of Medical Genetics and Genomics (ACMG) has released a list of five things patients and providers should discuss regarding specific genetic tests. The list was developed with input from committees involved in developing clinical practice guidelines and laboratory technical standards and guidelines. It is part of a “Choosing Wisely” campaign of ACMG. For more information, see http://www.choosingwisely.org/societies/american-college-of-medical-genetics-and-genomics/
The American College of Medical Genetics and Genomics (ACMG) has released a list of five things patients and providers should discuss regarding specific genetic tests. The list was developed with input from committees involved in developing clinical practice guidelines and laboratory technical standards and guidelines. It is part of a “Choosing Wisely” campaign of ACMG. For more information, see http://www.choosingwisely.org/societies/american-college-of-medical-genetics-and-genomics/
NORD Offers Free Membership and Newsletter to Medical Students Seeking to Learn About Rare Diseases
Students in medical school or others preparing for healthcare careers are invited to sign up for NORD’s new free student membership. NORD and its member organizations will provide expert-reviewed news about rare diseases. Student members will also receive a quarterly newsletter—developed especially for students—with articles written by students at campuses across the U.S. For more information, see http://rarediseases.org/get-involved/educate/educational-initiatives/for-students/
Students in medical school or others preparing for healthcare careers are invited to sign up for NORD’s new free student membership. NORD and its member organizations will provide expert-reviewed news about rare diseases. Student members will also receive a quarterly newsletter—developed especially for students—with articles written by students at campuses across the U.S. For more information, see http://rarediseases.org/get-involved/educate/educational-initiatives/for-students/
Students in medical school or others preparing for healthcare careers are invited to sign up for NORD’s new free student membership. NORD and its member organizations will provide expert-reviewed news about rare diseases. Student members will also receive a quarterly newsletter—developed especially for students—with articles written by students at campuses across the U.S. For more information, see http://rarediseases.org/get-involved/educate/educational-initiatives/for-students/
21st Century Cures Act Approved by House of Representatives in Vote of 344-77
The U.S. Senate is the next stop for the 21st Century Cures Act, approved by the House of Representatives on July 10th. Peter L. Saltonstall, President and CEO of NORD, issued a statement at the time of the House approval calling the action “a huge win for the rare disease community” and praising, in particular, the legislation’s:• Mandatory funding for NIH
• Strengthening FDA’s ability to streamline the clinical trials process and
• Further incentivizing the development of orphan products
NORD’s Washington DC-based policy team now is meeting with Senate HELP (Health, Education, Labor and Pensions) Committee members to discuss provisions within 21st Century Cures that are particularly important to the rare disease community. The legislation was introduced to promote innovation in medical research, the development of therapies, and the delivery of health services.
The U.S. Senate is the next stop for the 21st Century Cures Act, approved by the House of Representatives on July 10th. Peter L. Saltonstall, President and CEO of NORD, issued a statement at the time of the House approval calling the action “a huge win for the rare disease community” and praising, in particular, the legislation’s:• Mandatory funding for NIH
• Strengthening FDA’s ability to streamline the clinical trials process and
• Further incentivizing the development of orphan products
NORD’s Washington DC-based policy team now is meeting with Senate HELP (Health, Education, Labor and Pensions) Committee members to discuss provisions within 21st Century Cures that are particularly important to the rare disease community. The legislation was introduced to promote innovation in medical research, the development of therapies, and the delivery of health services.
The U.S. Senate is the next stop for the 21st Century Cures Act, approved by the House of Representatives on July 10th. Peter L. Saltonstall, President and CEO of NORD, issued a statement at the time of the House approval calling the action “a huge win for the rare disease community” and praising, in particular, the legislation’s:• Mandatory funding for NIH
• Strengthening FDA’s ability to streamline the clinical trials process and
• Further incentivizing the development of orphan products
NORD’s Washington DC-based policy team now is meeting with Senate HELP (Health, Education, Labor and Pensions) Committee members to discuss provisions within 21st Century Cures that are particularly important to the rare disease community. The legislation was introduced to promote innovation in medical research, the development of therapies, and the delivery of health services.
21st Century Cures Act Approved by House of Representatives in Vote of 344-77
The U.S. Senate is the next stop for the 21st Century Cures Act, approved by the House of Representatives on July 10th. Peter L. Saltonstall, President and CEO of NORD, issued a statement at the time of the House approval calling the action “a huge win for the rare disease community” and praising, in particular, the legislation’s:• Mandatory funding for NIH
• Strengthening FDA’s ability to streamline the clinical trials process and
• Further incentivizing the development of orphan products
NORD’s Washington DC-based policy team now is meeting with Senate HELP (Health, Education, Labor and Pensions) Committee members to discuss provisions within 21st Century Cures that are particularly important to the rare disease community. The legislation was introduced to promote innovation in medical research, the development of therapies, and the delivery of health services.
The U.S. Senate is the next stop for the 21st Century Cures Act, approved by the House of Representatives on July 10th. Peter L. Saltonstall, President and CEO of NORD, issued a statement at the time of the House approval calling the action “a huge win for the rare disease community” and praising, in particular, the legislation’s:• Mandatory funding for NIH
• Strengthening FDA’s ability to streamline the clinical trials process and
• Further incentivizing the development of orphan products
NORD’s Washington DC-based policy team now is meeting with Senate HELP (Health, Education, Labor and Pensions) Committee members to discuss provisions within 21st Century Cures that are particularly important to the rare disease community. The legislation was introduced to promote innovation in medical research, the development of therapies, and the delivery of health services.
The U.S. Senate is the next stop for the 21st Century Cures Act, approved by the House of Representatives on July 10th. Peter L. Saltonstall, President and CEO of NORD, issued a statement at the time of the House approval calling the action “a huge win for the rare disease community” and praising, in particular, the legislation’s:• Mandatory funding for NIH
• Strengthening FDA’s ability to streamline the clinical trials process and
• Further incentivizing the development of orphan products
NORD’s Washington DC-based policy team now is meeting with Senate HELP (Health, Education, Labor and Pensions) Committee members to discuss provisions within 21st Century Cures that are particularly important to the rare disease community. The legislation was introduced to promote innovation in medical research, the development of therapies, and the delivery of health services.
