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  1. www.eurordis.org › survey-reveals-lengthy-diagnostic-delaysMajor survey reveals lengthy diagnostic delays for rare disease...

    16. Mai 2024 · 16 May 2024, Paris – EURORDIS-Rare Diseases Europe has released findings from an extensive Rare Barometer survey highlighting the prolonged and inequitable diagnostic journeys faced by rare disease patients right across Europe.

  2. www.iarc.who.int › fr › news-eventsRare Disease Day 2022: IARC highlights the burden of rare cancers

    15. Mai 2024 · Rare Disease Day is marked on 28 February each year. Taken individually, none of these cancer types are major causes of disease. However, taken as a whole, rare cancers account for about 25–30% of all cancer diagnoses and 25% of cancer deaths, representing a substantial burden of disease.

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  4. servier.com › en › newsroomRare cancers and rare diseases: A common approach to treatment

    Vor 4 Tagen · Rare Disease Day 2022: IARC highlights the burden of rare cancers – IARC (who.int) (viewed in April 2024) Crooke S. Progress in molecular biology and translational science addressing the needs of nano-rare patients – ScienceDirect https://alliance-maladies-rares.org/nos-combats/ [not available in English]

  5. www.thelancet.com › journals › langloErasing stigma around rare diseases - The Lancet Global Health

    Vor 5 Tagen · Open Access Published: May 29, 2024 DOI: https://doi.org/10.1016/S2214-109X (24)00219-5. The Editorial on the landscape for rare diseases in 2024 offered insight into the challenges faced by people living with a rare disease, highlighting the need for collective action to address their unmet needs. One key issue is the stigma ...

  6. Bilder

    • Rare Disease Day 2022 - RRPF
    • Rare Disease Day 2022 - 28 February - International Mito Patients
    • Rare Disease Day 2022 - Share Your Colours - Rare Disease Day 2024
    • Rare Disease Day - The Global Foundation for Peroxisomal Disorders
    • Rare Disease Day 2022 - February 28

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  7. globalgenes.org › eventsUpcoming Global Genes Events

    Vor 3 Tagen · 2022 RARE Patient Advocacy Summit. The Summit forged meaningful connections with others in the rare disease community for future collaboration. Sessions provide attendees with insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies they ...

  8. news.ncbs.res.in › research › rare-disease-day-2022Rare Disease Day 2022 - In conversation with Prof. Raghu Padinjat

    21. Mai 2024 · Feb 28 2022. by Prof. Prof. Raghu Padinjat and Sonal Katyal. On the Rare Disease Day, we approached Prof. Raghu Padinjat, Cell biologist, Dean Research, NCBS-TIFR, to learn about his work on using stem cells to understand Lowe Syndrome. you may read his lab' research here: https://journals.biologists.com/bio/article/11/1/bio059066 ...

  9. www.eucope.org › rare-disease-hubEUCOPE's Rare Disease Hub | EUCOPE AISBL

    6. Mai 2024 · ?️Sounds of Science #13 on Rare Disease Day 2023. December 21, 2022?️Sounds of Science Episode 11 – 2022 Year in Review. October 17, 2022. Event Recap – Alexion’s Rare Disease Policies (13 October 2022) October 3, 2022. Event Report: The revision of the EU legal framework for orphan drugs and its impact on Germany. June 7, 2022