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Mashup Score: 2
Autoimmune Pulmonary Alveolar Proteinosis (aPAP) is a rare lung disorder affecting approximately seven people per million. The disease affects individuals of all races, geographic regions, gender, and socioeconomic status. It has been diagnosed in individuals from 3 to 90 years of age. To share community perspectives on this rare disease, the National Organization for Rare Disorders (NORD) is proud to partner with the PAP Foundation to organize and host a virtual, externally led Patient-Focused Drug
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 9Relief - National Organization for Rare Disorders - 2 month(s) ago
Californians are living with a rare disease. Many of them are facing additional burdens and costs related to the Los Angeles fires, which have displaced tens of thousands of residents. Your contribution to NORD’s Natural Disaster Emergency Relief Fund will allow us to support such urgent needs for our L.A. rare disease community as lodging, cell phones, and home repair. Please make your tax-deductible gift today. Donations can also be mailed to: NORD, Inc. – Donations, Dept. 5930, P.O. Box 4110, Woburn,
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
1 in 10 Californians has a #RareDisease. The #LAFires have added more hardship for many in our community. Your donation to NORD’s Natural Disaster Emergency Relief Fund can help with home repairs, lodging and more. Give here: https://t.co/3MiqfOwcls #Palisades #DisasterRelief https://t.co/OSCWte4D6N
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Mashup Score: 2Donate to NORD - Give Today! - 3 month(s) ago
Help NORD improves the lives of those impacted by rare disease. Your generous donation will empower hope, fund groundbreaking research, and provide crucial resources. Join us in making a difference.
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
For so many families impacted by #RareDiseases, NORD provides a lifeline. From education to financial assistance, we provide families with the care and support they deserve. We also provide hope. This holiday season, give the gift of hope: https://t.co/rN49H7mIV7 #RareDisease… https://t.co/pT2BBuLoLt https://t.co/uYTD2gc3jQ
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Mashup Score: 2Donate to NORD - Give Today! - 3 month(s) ago
Help NORD improves the lives of those impacted by rare disease. Your generous donation will empower hope, fund groundbreaking research, and provide crucial resources. Join us in making a difference.
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
🎁 This holiday, give a gift that gives back. Donate in honor or memory of a special person or buy apparel from NORD to sustain our mission of improving the health & well-being of Americans with rare diseases: https://t.co/vbL50dg9oV #HappyHolidays #GiftGiving #RareDiseases… https://t.co/LCG4vEw9Ax https://t.co/4YrSCzQ2U5
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Mashup Score: 7Donate to NORD - Give Today! - 3 month(s) ago
Help NORD improves the lives of those impacted by rare disease. Your generous donation will empower hope, fund groundbreaking research, and provide crucial resources. Join us in making a difference.
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
This National Family Caregivers Month, honor rare caregivers with a gift to NORD so we can provide families with everything from financial assistance and caregiver respite to education and training to advocate for #RareDiseases. Visit https://t.co/ppba0VeYBb to make your gift… https://t.co/GNAy1pfrE3 https://t.co/CZwgNwuCPl
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Mashup Score: 3Request for Applications: New Patient Registries Available to Join IAMRARE and RDCA-DAP - National Organization for Rare Disorders - 4 month(s) ago
The National Organization for Rare Disorders (NORD®) announces a request for applications for the implementation of two new patient registries on the IAMRARE®
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
📊 New #RFP for patient organizations! NORD and @CPathInstitute invite applications for the development of two new #RareDisease patient registries on NORD's IAMRARE® platform. Learn more: https://t.co/ZyZvaqhHgw Work with us to launch your registry and submit your patient-owned… https://t.co/1GIhsdCuTa https://t.co/UnX4ks7Rem
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Mashup Score: 2Request for Applications: New Patient Registries Available to Join IAMRARE and RDCA-DAP - National Organization for Rare Disorders - 4 month(s) ago
The National Organization for Rare Disorders (NORD®) announces a request for applications for the implementation of two new patient registries on the IAMRARE®
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
📊 New #RFP for patient organizations! NORD and @CPathInstitute invite applications for the development of two new #RareDisease patient registries on NORD's IAMRARE® platform. Learn more: https://t.co/ZyZvaqhHgw Work with us to launch your registry and submit your patient-owned… https://t.co/1GIhsdCuTa https://t.co/UnX4ks7Rem
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Mashup Score: 2Request for Applications: New Patient Registries Available to Join IAMRARE and RDCA-DAP - National Organization for Rare Disorders - 4 month(s) ago
The National Organization for Rare Disorders (NORD®) announces a request for applications for the implementation of two new patient registries on the IAMRARE®
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
📊 New #RFP for patient organizations! NORD and @CPathInstitute invite applications for the development of two new #RareDisease patient registries on NORD's IAMRARE® platform. Learn more: https://t.co/ZyZvaqhHgw Work with us to launch your registry and submit your patient-owned… https://t.co/1GIhsdCuTa https://t.co/UnX4ks7Rem
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Mashup Score: 4
The National Organization for Rare Disorders (NORD) announced two new requests for proposal (RFP) for grant funding related to Amyloidosis and Levy-Yeboa
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
Announcing 2 new NORD #RareDisease #ResearchGrants! • $45,000 for scientific/clinical studies on #Amyloidosis • $40,000 for scientific/clinical studies on #LevyYeboaSyndrome (#LYS) Learn more and apply by November 25: https://t.co/DwHVerKAtr
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Mashup Score: 7Latinos & Rare Diseases - National Organization for Rare Disorders - 4 month(s) ago
The National Organization for Rare Disorders (NORD) is hosting in-person listening sessions for Latinos affected by rare diseases. NORD has been a leader in rare disease patient advocacy for 40 years and is guided by our belief that every person living with a rare disease has the right to their best possible health and well- being. Through our listening session programming, we aim to listen to the experiences of Latino patients, families, and caregivers impacted by rare disease to better understand their
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
NORD is hosting community listening sessions for #Latino/#Latina/#Latinx #RareDisease patients, families, and caregivers in southern #California. Join us on November 20! Learn more and register here: https://t.co/xAGjPdPfhQ This event will be held in both English and Spanish.… https://t.co/G6zon34oF3 https://t.co/Tf1l4TQ54Q
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On Feb. 5, join the largest virtual gathering of the #Autoimmune Pulmonary Alveolar Proteinosis (#aPAP) community for a Patient-Focused Drug Development meeting hosted by NORD & @PAP_Foundation. Register now: https://t.co/QzGkDxCvBL #PulmonaryAlveolarProteinosis #PAP… https://t.co/kuDeLATk01 https://t.co/zXDC2w3RjZ