-
Mashup Score: 2Source: www.congressweb.comCategories: Latest Headlines, Rare DiseaseTweet
-
Mashup Score: 39#ShowingYourStripes Through Advocacy: Kala’s Story for Rare Disease Day - NORD (National Organization for Rare Disorders) - 2 year(s) ago
I am a mom, advocate, fighter and the biggest support to my two-year-old son Braxton, who was born with Phenylketonuria (PKU). My biggest mission since my son was born was to raise awareness, far and wide, about PKU and what a life with this disease means and looks like. It has become my personal goal Read more >
Categories: Latest Headlines, Rare DiseaseTweet-
In honor of #RareDiseaseDay today, NORD is sharing Kala's story. Kala is her son's biggest supporter & is spending today urging others to #advocate for #RareDisease related matters. Read more here on NORD's blog & #ShowYourStripes like Kala: https://t.co/AVOcc7sYcO https://t.co/wShdyXNPuu
-
-
Mashup Score: 0Accelerating Medicines Partnership® Bespoke Gene Therapy Consortium (AMP® BGTC) | The Foundation for the National Institutes of Health - 2 year(s) ago
Streamlining Adeno-Associated Virus (AAV) manufacturing and regulatory frameworks to increase accessibility of gene therapies for rare diseases
Source: fnih.orgCategories: Hem/Oncs, Latest HeadlinesTweet-
NIBR is proud to be a founding member of the AMP #BespokeGeneTherapyConsortium to streamline the development of and access to #genetherapy as treatment for rare genetic diseases. More about the consortium here @FNIH_Org: https://t.co/mQyXer49Vy #RareDiseaseDay #ShowYourStripes https://t.co/3tD3NusNut
-
-
Mashup Score: 0
The president of Make-A-Wish New Jersey speaks about the impact of granting a wish to a child living with a rare disease.
Source: HCPLive®Categories: Latest Headlines, Rare DiseaseTweet-
"We're coming in and we're treating the spirit," Tom Weatherall, CEO of @wishnj said. #MakeAWish #RareDiseaseDay #ShowYourStripes https://t.co/DWjGE6CaoK
-
-
Mashup Score: 0
The president of Make-A-Wish New Jersey speaks about the impact of granting a wish to a child living with a rare disease.
Source: HCPLive®Categories: General Medicine News, Latest HeadlinesTweet-
"We're coming in and we're treating the spirit," Tom Weatherall, CEO of @wishnj. #MakeAWish #RareDiseaseDay #ShowYourStripes https://t.co/erBEEsk80k
-
-
Mashup Score: 24
Your browser does not support the video tag.Days to go!Rare Disease Day® 2022It’s a day to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally!The National Organization for Rare Disorders (NORD) is proud to be the official US partner for Rare Disease Day. We work with our sister organization EURORDIS (Rare Diseases – Europe) and others all around the…
Categories: Latest Headlines, Rare DiseaseTweet-
Today is Rare Disease Day! 🦓 It's time to Show Your Stripes! How are you getting involved? Why is this day important to you? Share you answer on social media using the hashtags #RareDiseaseDay and #ShowYourStripes. Learn more at: https://t.co/p0g5CEy1W0 https://t.co/QPFSgzdPS8
-
-
Mashup Score: 1Experts Speak on the Importance of Rare Disease Day - 2 year(s) ago
Why is Rare Disease Day so important? Hear the answers from some of the most qualified professionals in rare disease fields.
Source: HCPLive®Categories: Latest Headlines, Rare DiseaseTweet-
"Providers who have dedicated their careers to the zebras of medicine explain that awareness is as significant of a component as treatment or research." A little preview of what we have planned for tomorrow! #RareDiseaseDay #ShowYourStripes https://t.co/rIVRukknqX
-
-
Mashup Score: 1Experts Speak on the Importance of Rare Disease Day - 2 year(s) ago
Why is Rare Disease Day so important? Hear the answers from some of the most qualified professionals in rare disease fields.
Source: HCPLive®Categories: General Medicine News, Latest HeadlinesTweet-
"Providers who have dedicated their careers to the zebras of medicine explain that awareness is as significant of a component as treatment or research." #RareDiseaseDay #ShowYourStripes @aamdsif @AHNtoday @StopSarcoidosis @wishnj @VUMC_MD @MUSChealth https://t.co/GRlmJnasy3
-
-
Mashup Score: 17
Your browser does not support the video tag.Days to go!Rare Disease Day® 2022It’s a day to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally!The National Organization for Rare Disorders (NORD) is proud to be the official US partner for Rare Disease Day. We work with our sister organization EURORDIS (Rare Diseases – Europe) and others all around the…
Categories: Latest Headlines, Rare DiseaseTweet-
Get ready for #RareDiseaseDay! Here are three ways to #ShowYourStripes on the big day: Raise awareness on social media, share your story and #LightUpForRare! Visit NORD’s website now to learn more and get involved: https://t.co/tavpOYYO23 https://t.co/tRCJur93Mg
-
-
Mashup Score: 12
Your browser does not support the video tag.Days to go!Rare Disease Day® 2022It’s a day to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally!The National Organization for Rare Disorders (NORD) is proud to be the official US partner for Rare Disease Day. We work with our sister organization EURORDIS (Rare Diseases – Europe) and others all around the…
Categories: Latest Headlines, Rare DiseaseTweet-
Get ready for #RareDiseaseDay! Here are three ways to #ShowYourStripes on the big day: Raise awareness on social media, share your story and #LightUpForRare! Visit NORD’s website now to learn more and get involved: https://t.co/tavpOYYO23 https://t.co/SX6FOlNobo
-
Join NORD & start planning for #RareDiseaseDay 2023! Register for our webinar on Wednesday, November 30 to learn more & support the rare disease community: https://t.co/TdblPmDJcO Learn more: https://t.co/o2hGJ57Wn4 #ShowYourStripes #LightUpForRare @eurordis https://t.co/kh7wy8PjM9