Preventable (@preventable_eu) 's Twitter Profile
Preventable

@preventable_eu

Preventable Horizon Europe Project
Sustainable Care for Rare Tumour Risk Syndromes (RTRS)

ID: 1631584792423673856

calendar_today03-03-2023 09:18:43

86 Tweet

80 Followers

77 Following

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The Preventable team at i3S is happy to have organised the latest IGCLC consensus meeting to define guidelines for genetic testing, management and treatment of HDGC patients. Glad to count with experts from 20 countries around 4 continents and 37 patients (6 countries)

The Preventable team at i3S is happy to have organised the latest IGCLC consensus meeting to define guidelines for genetic testing, management and treatment of HDGC patients. Glad to count with experts from 20 countries around 4 continents and 37 patients (6 countries)
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We are happy to share this amazing documentary that tells the story of one of the Portuguese families delaing with heriditary diffuse gastric cancer (HGDC). Thank you so much for sharing our story with all of us publico.pt/2024/06/19/cie…

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🔍 #GetToKnowUs the PREVENTABLE consortium partner: CHU de Rouen who is dedicated to offering accurate diagnoses, effective management strategies, and comprehensive genetic counselling. It helps individuals understand their genetic risks & make informed decisions about their health.

🔍 #GetToKnowUs the PREVENTABLE consortium partner: <a href="/CHURouen/">CHU de Rouen</a> who is dedicated to offering accurate diagnoses, effective management strategies, and comprehensive genetic counselling. It helps individuals understand their genetic risks &amp; make informed decisions about their health.
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🧬 Hereditary Diffuse Gastric Cancer (HDGC) is a rare genetic condition characterized by an increased risk of developing aggressive forms of gastric and breast cancer in young adults. HDGC follows an autosomal dominant inheritance pattern. Learn more: preventable.eu/rtrs/#_fusion-…

🧬 Hereditary Diffuse Gastric Cancer (HDGC) is a rare genetic condition characterized by an increased risk of developing aggressive forms of gastric and breast cancer in young adults. HDGC follows an autosomal dominant inheritance pattern. 

Learn more: preventable.eu/rtrs/#_fusion-…
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🔬✨ Key Takeaways: #PrevenTalk_1 “Understanding and Addressing the Challenges of Rare Tumour Risk Syndromes in Cancer by Uniting Science, Health Management, and Policy” was co-organised by European Health Management Association & Sociedade Portuguesa de Inovação Read more here: preventable.eu/2024/05/28/pre… #StayTuned #PrevenTalk_2

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💡 Patients with Rare Tumour Risk Syndromes, We Need Your Input! 💡 Are you 18 or older and living with a Rare Tumour Risk Syndrome? Help us improve care pathways by participating in our anonymous online survey, here: filipamrmachado.limesurvey.net/531964?lang=en Read more: preventable.eu/2024/06/18/sur…

💡 Patients with Rare Tumour Risk Syndromes, We Need Your Input! 💡

Are you 18 or older and living with a Rare Tumour Risk Syndrome? Help us improve care pathways by participating in our anonymous online survey, here: filipamrmachado.limesurvey.net/531964?lang=en

Read more: preventable.eu/2024/06/18/sur…
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🧬 Li-Fraumeni Syndrome is a rare and inherited genetic disorder characterised by an increased risk of developing diverse cancers, often at an early age due to mutations in the TP53 gene. More information: preventable.eu/rtrs/

🧬 Li-Fraumeni Syndrome is a rare and inherited genetic disorder characterised by an increased risk of developing diverse cancers, often at an early age due to mutations in the TP53 gene. 

More information: preventable.eu/rtrs/
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🩺 Calling All Clinicians! Share Your Expertise on RTRS Care Pathways 🩺 We invite clinicians with experience in recommending care for patients with Rare Tumour Risk Syndromes (RTRS) to participate in our anonymous online survey: filipamrmachado.limesurvey.net/873192?lang=en Your insights are needed

🩺 Calling All Clinicians! Share Your Expertise on RTRS Care Pathways 🩺

We invite clinicians with experience in recommending care for patients with Rare Tumour Risk Syndromes (RTRS) to participate in our anonymous online survey: filipamrmachado.limesurvey.net/873192?lang=en

Your insights are needed
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🔍 #GetToKnowUs ! The PREVENTABLE project consortium partner is CentreHenriBecquerel. They are a comprehensive cancer centre dedicated to the fight against cancer. As a non-profit hospital, they are committed to providing exceptional care and advancing research in the oncology field.

🔍 #GetToKnowUs ! The PREVENTABLE project consortium partner is <a href="/CentreBecquerel/">CentreHenriBecquerel</a>. They are a comprehensive cancer centre dedicated to the fight against cancer. As a non-profit hospital, they are committed to providing exceptional care and advancing research in the oncology field.
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🧬 Peutz-Jeghers Syndrome (PJS) is a rare genetic tumour risk syndrome, caused by a germline mutation in the STK11 gene. PJS is considered rare with an estimated prevalence of fewer than 1 in 200,000 individuals. More information: preventable.eu/rtrs/

🧬 Peutz-Jeghers Syndrome (PJS) is a rare genetic tumour risk syndrome, caused by a germline mutation in the STK11 gene. PJS is considered rare with an estimated prevalence of fewer than 1 in 200,000 individuals.

More information: preventable.eu/rtrs/
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🔍 #GetToKnowUs ! The PREVENTABLE project consortium partner is Radboud Universitair Medisch Centrum (Radboudumc) which is a forefront healthcare innovation institution dedicated to patient care, cutting-edge research, and comprehensive education. Located in the Netherlands.

🔍 #GetToKnowUs ! The PREVENTABLE project consortium partner is Radboud Universitair Medisch Centrum (<a href="/radboudumc/">Radboudumc</a>) which is a forefront healthcare innovation institution dedicated to patient care, cutting-edge research, and comprehensive education. Located in the Netherlands.
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🔍 #GetToKnowUs #PREVENTABLE consortium partner is Helse Bergen Hf, a renowned healthcare institution dedicated to investing in medical & health-related research. Their comprehensive approach ensures in various fields, making them a cornerstone in the healthcare community.

🔍 #GetToKnowUs #PREVENTABLE consortium partner is Helse Bergen Hf, a renowned healthcare institution dedicated to investing in medical &amp; health-related research. Their comprehensive approach ensures in various fields, making them a cornerstone in the healthcare community.
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🧬 PTEN Hamartoma Tumour Syndrome (PHTS) is a rare genetic tumour risk syndrome. PHTS is caused by DNA variants in the PTEN gene. PHTS is considered rare, with an estimated prevalence of 1 in 200,000. More information: preventable.eu/rtrs/

🧬 PTEN Hamartoma Tumour Syndrome (PHTS) is a rare genetic tumour risk syndrome. PHTS is caused by DNA variants in the PTEN gene. PHTS is considered rare, with an estimated prevalence of 1 in 200,000. 

More information: preventable.eu/rtrs/
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🔍 #GetToKnowUs ! #PREVENTABLE consortium partner is the University of Bonn offers comprehensive services for patients and physicians, focusing primarily on hereditary cancers. They provide a combination of consultations, clinical studies, and advanced molecular diagnostics.

🔍 #GetToKnowUs ! #PREVENTABLE consortium partner is the University of Bonn offers comprehensive services for patients and physicians, focusing primarily on hereditary cancers. They provide a combination of consultations, clinical studies, and advanced molecular diagnostics.
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🔍 #GetToKnowUs ! The #PREVENTABLE consortium partner is IPATIMUP – Instituto de Patologia e Imunologia Molecular da Universidade do Porto which is a non-profit association dedicated to understanding the causes and evolution of human oncologic diseases.

🔍 #GetToKnowUs ! The #PREVENTABLE consortium partner is <a href="/IPATIMUP/">IPATIMUP</a> – Instituto de Patologia e Imunologia Molecular da Universidade do Porto which is a non-profit association dedicated to understanding the causes and evolution of human oncologic diseases.
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🧬 Hereditary Leiomyomatosis and Renal Cell Cancer is a rare genetic disorder characterized by the development of benign lesions in smooth muscle called leiomyomas in the skin and uterus, as well as an increased risk of renal cell carcinoma, due to mutations in the FH gene.

🧬 Hereditary Leiomyomatosis and Renal Cell Cancer is a rare genetic disorder characterized by the development of benign lesions in smooth muscle called leiomyomas in the skin and uterus, as well as an increased risk of renal cell carcinoma, due to mutations in the FH gene.
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🔍 #GetToKnowUs ! The #PREVENTABLE project consortium partner is Institut d'Investigació Biomèdica de Girona (IDIBGI Institut d'Investigació Biomèdica de Girona) which is a leading institute dedicated to translational research across a diverse range of scientific areas. 🔗 Learn More: preventable.eu/about/#who

🔍 #GetToKnowUs ! The #PREVENTABLE project consortium partner is Institut d'Investigació Biomèdica de Girona (<a href="/idibgi/">IDIBGI Institut d'Investigació Biomèdica de Girona</a>) which is a leading institute dedicated to translational research across a diverse range of scientific areas. 

🔗 Learn More: preventable.eu/about/#who
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📢 Save Your Spot! #EventAlert Register for our Midterm Conference On Oct 3, 2024, at Rouen, France: The theme: Charting the Economics of Hereditary Cancer: From Theory to Real World Data. 🔗 Register Here: ec.europa.eu/eusurvey/runne… 💡 More Information: preventable.eu/2024/06/21/pre…

📢 Save Your Spot! #EventAlert
Register for our Midterm Conference On Oct 3, 2024, at Rouen, France: The theme: Charting the Economics of Hereditary Cancer: From Theory to Real World Data.

🔗 Register Here: ec.europa.eu/eusurvey/runne…

💡 More Information: preventable.eu/2024/06/21/pre…
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📢 Our 3nd newsletter is out now! 👉 Read more here: preventable.eu/wp-content/upl… 🌟If you have not been on our mailing list, subscribe here: preventable.eu/newsletter/ #PREVENTABLE #horizoneurope #Healthcare #Research #RareDiseases #RareTumourRiskSyndromes #KnowAboutRTRS #newsletter

📢 Our 3nd newsletter is out now!
👉 Read more here: preventable.eu/wp-content/upl…

🌟If you have not been on our mailing list, subscribe here: preventable.eu/newsletter/

#PREVENTABLE #horizoneurope #Healthcare #Research #RareDiseases #RareTumourRiskSyndromes #KnowAboutRTRS #newsletter