June 21st is the International Awareness Day for SYNGAP1 Rare Disease! We want to share with you our joint international campaign for Syngap1 Awareness Day. From our international partners we have collected our wishes for our children and families. Join us in spreading the word and raising awareness about SYNGAP1, a rare genetic disorder that affects many lives around the world. Awareness is the first step towards progress, and together we can accelerate research, and provide the much-needed support for individuals and families affected by SYNGAP1. Watch this powerful video featuring international organization leaders sharing their heartfelt wishes for the SYNGAP1 community. Let’s amplify their voices and work towards a brighter future for everyone impacted by this rare disease. This is the first one of a series. This one is with Latin America, Germany, and Poland. Make a Wish4Syngap. Share this post and video to help us reach more people. Together, we can make a difference! #SYNGAP1Awareness #SGN #SupportSYNGAP1 #TogetherForACure #WISH4SYNGAP #SPLASH4SYNGAP
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June 21st is the International Awareness Day for SYNGAP1 Rare Disease! We want to share with you our joint international campaign for Syngap1 Awareness Day. From our international partners we have collected our wishes for our children and families. Join us in spreading the word and raising awareness about SYNGAP1, a rare genetic disorder that affects many lives around the world. Awareness is the first step towards progress, and together we can accelerate research, and provide the much-needed support for individuals and families affected by SYNGAP1. Watch this powerful video featuring international organization leaders sharing their heartfelt wishes for the SYNGAP1 community. Let’s amplify their voices and work towards a brighter future for everyone impacted by this rare disease. This is the first one of a series. This one is with Australia, Spain, and Netherlands. Make a Wish4Syngap. Share this post and video to help us reach more people. Together, we can make a difference! #SYNGAP1Awareness #SGN #SupportSYNGAP1 #TogetherForACure #WISH4SYNGAP #SPLASH4SYNGAP
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June 21st is the International Awareness Day for SYNGAP1 Rare Disease! We want to share with you our joint international campaign for Syngap1 Awareness Day. From our international partners we have collected our wishes for our children and families. Join us in spreading the word and raising awareness about SYNGAP1, a rare genetic disorder that affects many lives around the world. Awareness is the first step towards progress, and together we can accelerate research, and provide the much-needed support for individuals and families affected by SYNGAP1. Watch this powerful video featuring international organization leaders sharing their heartfelt wishes for the SYNGAP1 community. Let’s amplify their voices and work towards a brighter future for everyone impacted by this rare disease. This is the third video of a series. This one is with USA, Germany and Switzerland. Make a Wish4Syngap. Share this post and video to help us reach more people. Together, we can make a difference! #SYNGAP1Awareness #SGN #SupportSYNGAP1 #WISH4SYNGAP #SPLASH4SYNGAP
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#knowledgesharing 📚 but this time, with the wider community. Here is a valuable resource by Rare Disease Day and Genetic Alliance UK to share with parents, carers and educators on bringing the rare disease conversations to the classroom. #nursingeducation #awareness #RareDiseaseDay #nurses #midwives #nursingstudents #midwiferystudents
Our latest school toolkit has been designed in partnership with Genetic Alliance UK to help children aged 8-12 imagine what it is like to live with a rare disease and to learn more about Rare Disease Day. 📣Start the conversation on rare diseases with teachers and young people and help educate the future generation on how they can raise awareness for those living with a rare disease. 👉Download the toolkit and a range of other educational materials by clicking the link: https://lnkd.in/ef-TSEUv . . #RareDiseaseDay #ShareYourColours #LightUpForRare #Awareness #Education
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Today, across the globe, from Rolle to Bidart and Boston, SOPHiA GENETICS teams stand united under this year's theme from the National Organization for Rare Disorders: #ShowYourStripes. SOPHiANs all over the world showed their stripes and a smile, turning a simple act of solidarity into a powerful dedication to support those affected by rare diseases. By participating in this week-long campaign, we are reinforcing our pledge to innovate, support, and empower the rare disease community. Our initiative goes beyond a day or a week - it's a highlight of our ongoing commitment to driving advancements in rare disease care. 🌍 Together, we are more than a team – we are a united force for positive change in the world of #healthcare. #RareDiseaseDay #RareDisease #Awareness #DataDrivenMedicine #HappyAtWork
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Ultra Care Liaison at Ultragenyx-Another Way to Elevate Consciousness on Rare Diseases-
Always with the right view… a view always with sense of urgency!
"All children deserve the chance to live. We do not need your sympathy; we do not need your empathy; we need action from our FDA partners." - Mark Dant, Father, Advocate and Executive Director for The Ryan Foundation for Rare Disease Research During this week’s “Qualifying Biomarkers to Support Rare Disease Regulatory Pathways” workshop, hosted by the Reagan-Udall Foundation for the FDA, Mark Dant delivered a powerful call to the FDA. After learning his son Ryan was diagnosed with Mucopolysaccharidos 1 (MPS1), Mark and his wife Jeanne worked tirelessly to get funding to find a treatment for their son. Learn more about Ryan’s story, and his family’s continued advocacy for the #RareDisease community: https://lnkd.in/gqnYGNkY
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The global community in raising awareness for Crohn's disease and colitis during Crohn's & Colitis Awareness Week, observed from Dec. 1-7 each year! Crohn's awareness spans events like Crohn's and Colitis Awareness Week, Crohn's and Colitis Awareness Month, and World IBD Day. These aim to boost public understanding of Crohn's disease and colitis, two prevalent forms of Inflammatory Bowel Disease (IBD). Crohn's and colitis affect the GI tract, impacting daily life. Nevertheless, the struggles can be invisible. Awareness Week helps make IBD visible, fostering understanding and support. Evidence we unite with the global community to observe World IBD Day! Our thoughts are with the 10 million individuals worldwide grappling with inflammatory bowel disease, honoring the resilience of IBD warriors who persist in making a positive impact. To those who bravely fought this disease, we stand in solidarity with you! #crohnsdisease #colitis #awareness #ibd #medicalwriter #datamanagment #biostatistical #clinicalresearch
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November marks Alpha-1 Antitrypsin Deficiency (AATD) Awareness Month. AATD is a rare genetic condition that can lead to severe lung and liver diseases. It's often undiagnosed, but early detection and intervention may assist in managing the symptoms. At Kamada, we are committed to improving Alpha-1 patients' lives; Together with leading clinicians and patient associations, we work tirelessly on innovative treatments for those who need them most. This year's Alpha-1 awareness month theme is "Make Your Move For Alpha-1". Whether it's raising awareness on social media, fundraising for the Alpha-1 Virtual Walk, or contributing to the Alpha-1 Research Registry, every action counts and benefits the Alpha-1 community. So, Let's "make a move" by joining forces to raise awareness for AATD. Together, we can provide hope and improve the lives of those affected by this condition. To learn more about Alpha-1 Awareness Month click (https://lnkd.in/ee8tSy4w) #Alpha1AntitrypsinDeficiency #AwarenessMonth #ResearchMatters #MakeYourMoveForAlpha1
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Today marks Rare Disease Day, a global initiative observed on the last day of February to shed light on the impact of rare diseases and underscore the urgent need for research. Collectively, rare diseases are more common than we think, with over 7,000 different rare diseases affecting over 300 million people worldwide. Despite this, research funding remains scarce, primarily reliant on patients and advocacy organizations. Among these rare diseases is Glut1 Deficiency, a cause personally supported by President Neil Myers through Glut1 Deficiency Foundation . This is the time of year to raise awareness, educate, and gather funds to support programs for patients, families, and dedicated scientists working tirelessly to enhance patient care and advance research for a deeper understanding, improved treatments, and, ultimately, a cure. Visit the campaign page to learn more about Glut1 Deficiency at https://bit.ly/3UZJBPq #WilliamsCreek #Glut1Deficiency #RareDiseaseDay
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Rare disease research unlocks scientific discoveries that benefit everyone. The Rare As One Network supports patient-led organizations to collaborate with scientists and clinicians to drive rare disease research forward so they can find new treatments and cures in poorly understood diseases. We’re excited to open a new funding opportunity to expand the #RareAsOne community and increase collaboration and partnership between rare disease organizations in 3 disease areas. Are you a patient advocate for a rare disease? Learn more and apply: http://czi.co/RareAsOneRFA #RareDisease #RareDiseaseAwareness #Funding
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On this Rare Disease Day, join Saol in honoring the strength and resilience of individuals facing the challenges of a rare disease, including those bravely navigating Pyruvate Dehydrogenase Complex Deficiency (PDCD). In solidarity with the rare disease community, we proudly display our stripes. Just as zebras stand out in their beauty and uniqueness, so do those living with rare diseases. We would like to extend our gratitude to organizations like National Organization for Rare Disorders, United Mitochondrial Disease Foundation, Cure Mito Foundation, MitoAction, and Hope for PDCD Foundation, whose unwavering advocacy provides crucial support to patients and families with a rare disease. PDCD, a rare genetic disorder impacting energy metabolism, presents formidable obstacles. Saol is proud to sponsor an ongoing trial for PDCD, and looks forward to the day when there are more treatments for rare diseases. As we #ShowYourStripes today let's raise awareness and advocate for the needs of the rare disease community. #RareDiseaseDay #Saolrx #PDCD🦓
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A good opportunity to remind you of our #SYNGAP1 registry. www.syngap1.eu All patients please take part and use the data to HELP the researchers at EURAS Project to find an effective therapy!