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Mashup Score: 0RARE Compassion Program - 1 month(s) ago
The David R. Cox Scholarship for Rare Compaasion aims to bridge the gap between medicine and rare disease.
Source: globalgenes.orgCategories: General Medicine News, NeurologyTweet
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Mashup Score: 7Rare Drug Development Symposium - 1 month(s) ago
Rare Drug Development Happens Year-Round Global Genes provides educational resources to help advocates and organizations become better […]
Source: globalgenes.orgCategories: General Medicine News, NeurologyTweet
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Mashup Score: 8My Zebra Rare Tale - 1 month(s) ago
The Zebra Tales campaign helped me to put it into a different preceptive — telling my story using circumstances everyone can relate to! Instead of trying to effectively explain it standing in the checkout line, I put it in this story.
Source: globalgenes.orgCategories: General Medicine News, NeurologyTweet-
"I always struggle to tell my story, so complicated and rare that most people would be lost by the 2nd sentence...This campaign helped me to put it into a different preceptive." Read the rest of Brenda Fregger's #ZebraTale here: https://t.co/SPI11Gjz9k #ZebraTales #RareDiseaseDay https://t.co/5aZs10gQe8
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Mashup Score: 3Rare Drug Development Symposium Poster Guide - 1 month(s) ago
FREQUENTLY ASKED QUESTIONS Are there presenter costs? There are no additional presenter costs. Accepted poster presenters will […]
Source: globalgenes.orgCategories: General Medicine News, NeurologyTweet
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Mashup Score: 13NEXT Report 2024: Rewriting the Rules - 2 month(s) ago
A look at the 2024 NEXT Report from Global Genes, including the need to think differently about the challenges for rare, ultra-rare, and hyper-rare conditions, and the promise and challenges of emerging gene-editing and other genomic medicines.
Source: globalgenes.orgCategories: General Medicine News, NeurologyTweet
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Mashup Score: 25
As an organization founded to gather together advocates for rare diseases to enable and empower their efforts, Global Genes is keenly aware of the need for and difficulties involved in traveling with a disability and the related medical equipment.
Source: globalgenes.orgCategories: General Medicine News, NeurologyTweet
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Mashup Score: 43World Rare Disease Day - 2 month(s) ago
World Rare Disease Day is an annual observance to raise awareness for the 400 million people affected by rare disease globally.
Source: globalgenes.orgCategories: General Medicine News, NeurologyTweet
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Mashup Score: 6Misunderstood: Raising my voice and awareness for those who are rare - 2 month(s) ago
One word to describe a patient living with a rare disease is misunderstood. Rare diseases are a severe, chronic, degenerative, and often life-threatening group of conditions.
Source: globalgenes.orgCategories: General Medicine News, NeurologyTweet-
We heard from Susanne, a rare patient diagnosed with 2 #RareDiseases, her journey to diagnosis, and periods of feeling isolated. “In sharing my story, I hope to shed light on others who are suffering in the darkness looking for answers…” Read her story: https://t.co/MfbhMw5zmq https://t.co/M1vh3ukAnh
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Mashup Score: 43World Rare Disease Day - 2 month(s) ago
World Rare Disease Day is an annual observance to raise awareness for the 400 million people affected by rare disease globally.
Source: globalgenes.orgCategories: General Medicine News, NeurologyTweet
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Mashup Score: 13
Rare Disease Day is February 28th this year, so Global Genes reached out to members of the rare disease community to share their stories about their diagnostic journey, treatment protocols, and becoming advocates. Hear from RARE Mom, Sandra Bedrosian Sermone about her son’s journey with ADNP Syndrome.
Source: globalgenes.orgCategories: General Medicine News, NeurologyTweet
Hear from past participants of the Rare Compassion Program, a Global Genes program that provides a space for med students to learn from those with an undiagnosed or rare disease & creates a space for patients to understand the medical system. To watch: https://t.co/yFADZJ88cX https://t.co/agC8rh7lHv