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Osteogenesis Imperfecta Foundation Biennial Conference

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Osteogenesis Imperfecta Foundation Biennial Conference

The Osteogenesis Imperfecta Foundation (OIF) will host its biennial national conference in Baltimore July 13-15, 2018. The program will feature sessions on medical advances and practical living guidance, along with forums with leading experts in osteogenesis imperfecta care and research. More info.  

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The Osteogenesis Imperfecta Foundation (OIF) will host its biennial national conference in Baltimore July 13-15, 2018. The program will feature sessions on medical advances and practical living guidance, along with forums with leading experts in osteogenesis imperfecta care and research. More info.  

The Osteogenesis Imperfecta Foundation (OIF) will host its biennial national conference in Baltimore July 13-15, 2018. The program will feature sessions on medical advances and practical living guidance, along with forums with leading experts in osteogenesis imperfecta care and research. More info.  

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Osteogenesis Imperfecta Foundation Biennial Conference
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National Tay-Sachs & Allied Diseases Association Grants Available

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National Tay-Sachs & Allied Diseases Association Grants Available

The National Tay-Sachs & Allied Diseases Association (NTSAD), in partnership with the Cure Tay-Sachs Foundation, is currently accepting pre-applications for research grants, with a deadline of Jan. 12, 2018. NTSAD funds research that may lead to treatments for lysosomal storage diseases or leukodystrophies impacting the central nervous system. More info.

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The National Tay-Sachs & Allied Diseases Association (NTSAD), in partnership with the Cure Tay-Sachs Foundation, is currently accepting pre-applications for research grants, with a deadline of Jan. 12, 2018. NTSAD funds research that may lead to treatments for lysosomal storage diseases or leukodystrophies impacting the central nervous system. More info.

The National Tay-Sachs & Allied Diseases Association (NTSAD), in partnership with the Cure Tay-Sachs Foundation, is currently accepting pre-applications for research grants, with a deadline of Jan. 12, 2018. NTSAD funds research that may lead to treatments for lysosomal storage diseases or leukodystrophies impacting the central nervous system. More info.

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National Tay-Sachs & Allied Diseases Association Grants Available
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National Niemann-Pick Disease Foundation Seeks Executive Director

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National Niemann-Pick Disease Foundation Seeks Executive Director

The board of the National Niemann-Pick Disease Foundation (NNPDF) is searching for an executive director. Founded 25 years ago, the NNPDF supports patients and families affected by Niemann-Pick disease, a rare disease affecting fewer than 1,000 patients worldwide. More info.

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The board of the National Niemann-Pick Disease Foundation (NNPDF) is searching for an executive director. Founded 25 years ago, the NNPDF supports patients and families affected by Niemann-Pick disease, a rare disease affecting fewer than 1,000 patients worldwide. More info.

The board of the National Niemann-Pick Disease Foundation (NNPDF) is searching for an executive director. Founded 25 years ago, the NNPDF supports patients and families affected by Niemann-Pick disease, a rare disease affecting fewer than 1,000 patients worldwide. More info.

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HCU Network America Grant Requests

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HCU Network America Grant Requests

HCU Network America and HCU Network Australia have announced a joint 2018 Call for Expressions of Interest for Research Grants to advance homocystinuria research toward diagnosis and treatment. Expressions of interest should be received no later than Jan. 15, 2018. More info.

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HCU Network America and HCU Network Australia have announced a joint 2018 Call for Expressions of Interest for Research Grants to advance homocystinuria research toward diagnosis and treatment. Expressions of interest should be received no later than Jan. 15, 2018. More info.

HCU Network America and HCU Network Australia have announced a joint 2018 Call for Expressions of Interest for Research Grants to advance homocystinuria research toward diagnosis and treatment. Expressions of interest should be received no later than Jan. 15, 2018. More info.

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HCU Network America Grant Requests
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Cornelia de Lange Syndrome Foundation Call for Abstracts

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Cornelia de Lange Syndrome Foundation Call for Abstracts

The Cornelia de Lange Syndrome Foundation is currently accepting abstracts for its 8th Biennial Scientific & Educational Symposium. In addition to invited speakers, several platform talks are chosen from submitted abstracts. The deadline to submit an abstract is Feb. 15, 2018. More info.

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The Cornelia de Lange Syndrome Foundation is currently accepting abstracts for its 8th Biennial Scientific & Educational Symposium. In addition to invited speakers, several platform talks are chosen from submitted abstracts. The deadline to submit an abstract is Feb. 15, 2018. More info.

The Cornelia de Lange Syndrome Foundation is currently accepting abstracts for its 8th Biennial Scientific & Educational Symposium. In addition to invited speakers, several platform talks are chosen from submitted abstracts. The deadline to submit an abstract is Feb. 15, 2018. More info.

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Cornelia de Lange Syndrome Foundation Call for Abstracts
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Living With Aplastic Anemia Patient and Family Conferences

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Living With Aplastic Anemia Patient and Family Conferences

The Aplastic Anemia and MDS Inernational Foundation (AAMDSIF) will be hosting seven “Living with Aplastic Anemia, MDS, PNH” patient and family conferences in cities around the country. Each free event offers incredible learning opportunities form leading medical experts, the ability to connect directly with other patients and caregivers, and hope for the future. More info.

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The Aplastic Anemia and MDS Inernational Foundation (AAMDSIF) will be hosting seven “Living with Aplastic Anemia, MDS, PNH” patient and family conferences in cities around the country. Each free event offers incredible learning opportunities form leading medical experts, the ability to connect directly with other patients and caregivers, and hope for the future. More info.

The Aplastic Anemia and MDS Inernational Foundation (AAMDSIF) will be hosting seven “Living with Aplastic Anemia, MDS, PNH” patient and family conferences in cities around the country. Each free event offers incredible learning opportunities form leading medical experts, the ability to connect directly with other patients and caregivers, and hope for the future. More info.

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Living With Aplastic Anemia Patient and Family Conferences
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Collaborative Effort Is Underway to Screen Small Molecules for Therapeutic Potential for NGLY1 Deficiency

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Collaborative Effort Is Underway to Screen Small Molecules for Therapeutic Potential for NGLY1 Deficiency

A collaboration involving a patient organization (NGLY1.org), government (NIH National Center for Advancing Translational Sciences) and industry (Retrophin) is underway to screen hundreds of thousands of small molecules for their therapeutic potential in NGLY1 deficiency.

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A collaboration involving a patient organization (NGLY1.org), government (NIH National Center for Advancing Translational Sciences) and industry (Retrophin) is underway to screen hundreds of thousands of small molecules for their therapeutic potential in NGLY1 deficiency.

A collaboration involving a patient organization (NGLY1.org), government (NIH National Center for Advancing Translational Sciences) and industry (Retrophin) is underway to screen hundreds of thousands of small molecules for their therapeutic potential in NGLY1 deficiency.

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Collaborative Effort Is Underway to Screen Small Molecules for Therapeutic Potential for NGLY1 Deficiency
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15th International Symposium on MPS and Related Diseases Is Planned

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15th International Symposium on MPS and Related Diseases Is Planned

Registration is now open for the 15th International Symposium on MPS and Related Diseases, to take place in San Diego from August 2-4, 2018. The symposium will feature opportunities for scientific enrichment as well as family fun.

Abstracts for the symposium are being accepted until January 8. For more information, visit the website or email pdickson@labiomed.org.

Prior to the symposium, on August 1 at the same location, a one-day workshop will cover the clinical features of MPS and related diseases, including demonstrations of findings on volunteers affected with the conditions as well as basic disease biology, current work in diagnostic and therapeutic development, and biotechnology opportunities.

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Registration is now open for the 15th International Symposium on MPS and Related Diseases, to take place in San Diego from August 2-4, 2018. The symposium will feature opportunities for scientific enrichment as well as family fun.

Abstracts for the symposium are being accepted until January 8. For more information, visit the website or email pdickson@labiomed.org.

Prior to the symposium, on August 1 at the same location, a one-day workshop will cover the clinical features of MPS and related diseases, including demonstrations of findings on volunteers affected with the conditions as well as basic disease biology, current work in diagnostic and therapeutic development, and biotechnology opportunities.

Registration is now open for the 15th International Symposium on MPS and Related Diseases, to take place in San Diego from August 2-4, 2018. The symposium will feature opportunities for scientific enrichment as well as family fun.

Abstracts for the symposium are being accepted until January 8. For more information, visit the website or email pdickson@labiomed.org.

Prior to the symposium, on August 1 at the same location, a one-day workshop will cover the clinical features of MPS and related diseases, including demonstrations of findings on volunteers affected with the conditions as well as basic disease biology, current work in diagnostic and therapeutic development, and biotechnology opportunities.

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15th International Symposium on MPS and Related Diseases Is Planned
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Homocystinuria Research Grants Are Available

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Homocystinuria Research Grants Are Available

HCU Network America and HCU Network Australia have announced a joint 2018 Call for Expressions of Interest for Research Grants. January 15, 2018, is the deadline to respond to express interest.

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HCU Network America and HCU Network Australia have announced a joint 2018 Call for Expressions of Interest for Research Grants. January 15, 2018, is the deadline to respond to express interest.

HCU Network America and HCU Network Australia have announced a joint 2018 Call for Expressions of Interest for Research Grants. January 15, 2018, is the deadline to respond to express interest.

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Homocystinuria Research Grants Are Available
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Register Now for Adrenal Insufficiency United Conference

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Register Now for Adrenal Insufficiency United Conference

Adrenal Insufficiency United will host its first-ever conference in Kansas City from March 23-25, 2018. Registration is now open. Speakers will include several leading medical experts on topics related to adrenal insufficiency.

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Adrenal Insufficiency United will host its first-ever conference in Kansas City from March 23-25, 2018. Registration is now open. Speakers will include several leading medical experts on topics related to adrenal insufficiency.

Adrenal Insufficiency United will host its first-ever conference in Kansas City from March 23-25, 2018. Registration is now open. Speakers will include several leading medical experts on topics related to adrenal insufficiency.

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Register Now for Adrenal Insufficiency United Conference
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