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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
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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: 5
The National Organization for Rare Disorders (NORD) and the Rare Disease Diversity Coalition (RDDC) have unveiled the findings of a groundbreaking national
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
NEW: Today, NORD and @rarediseasediv1 released the findings of our first-of-its-kind survey of underrepresented #RareDisease patients and caregivers, revealing unique barriers to care that MUST be addressed: https://t.co/Guzel6Qgs5 https://t.co/XvhBpLn2VE
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Mashup Score: 20We Exist: Tanita’s Experience as a Black Woman with Huntington’s Disease - National Organization for Rare Disorders - 5 month(s) ago
By Tanita A.
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
#RareDiseaseDay falls during #BlackHistoryMonth, so let's talk about how rare diseases can impact Black patients differently. Read Tanita's story of living with #HuntingtonsDisease and the memoir she wrote about facing racism within the medical community: https://t.co/mHhhriM8e2 https://t.co/0GSqojtHvq
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Mashup Score: 6Latinos & Rare Diseases - National Organization for Rare Disorders - 5 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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Mashup Score: 3World Anesthesia Day: The Critical Role of Pediatric Anesthesia for Children with Rare Disorders - National Organization for Rare Disorders - 5 month(s) ago
The medical marvel of anesthesia was demonstrated for the first time 178 years ago at Massachusetts General Hospital. That day is commemorated today by World
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
For #WorldAnesthesiaDay today, Dr. Curtis Mar tells us how growing up with #VACTERLSyndrome and having multiple childhood surgeries inspired him to raise awareness for the unique considerations of #PediatricAnesthesia for rare disease patients: https://t.co/mGJDCOfiTq… https://t.co/AZj0ykLnak https://t.co/K9jXnfykDc
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Mashup Score: 2
The National Organization for Rare Disorders (NORD) has important information to share with you ahead of Medicare Open Enrollment as two new benefits of the
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
If you are on #Medicare or plan to enroll for 2025, NORD has important information about two new changes that affect the cost of your medications. Learn more ahead of Open Enrollment on October 15: https://t.co/5tVKfJqKnI #InflationReductionAct #OpenEnrollment
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Mashup Score: 3
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: 28Congress: Reauthorize the Rare Pediatric Disease Priority Review Voucher Program - National Organization for Rare Disorders - 6 month(s) ago
As many as half of all people living with a rare disease are children, and rare pediatric disease priority review vouchers (PRVs) offer a crucial incentive
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
On behalf of children with #RareDiseases and their caregivers, NORD strongly urges Congress to reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) program before the September 30, 2024 deadline. Learn more: https://t.co/Oj0GsOxsSi
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Mashup Score: 8
The National Organization for Rare Disorders (NORD) applauds the House of Representatives for passing the Give Kids a Chance Act, a major step toward
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
Read our statement from NORD CEO Pam Gavin on the House of Representatives' unanimous vote to advance the #GiveKidsAChanceAct: https://t.co/atsdfuquOi The bill's bipartisan support underscores the importance of #pediatric #RareDisease research. Now, it's time for the Senate to… https://t.co/cHfp4T8Tpw
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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