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Imagine the population of the 3rd largest country in the world. ?? Imagine every man, woman, person and child in that country. ?????????? And now imagine every single one of them was living with a rare disease. On #RareDiseaseDay, we aim to highlight the voices of every one of these people and raise awareness about their experiences. Ultimately, giving the rare disease community a platform to share their experiences allows us to generate change and catalyse the process of achieving equity. Download our Infographics: https://lnkd.in/efRbDevB

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Maggie Bonfield

Community Volunteer/ Psychotherapist/ Founder member/ Director 2018/19 Exeter Literary Festival/ Senior Lecturer/Headteacher.

3 周

??

Miriam S R

CEO ADCUM inborn errors of metabolism and Founder of FECROG - Pediatric Federation of Chronic and Genetic Diseases

3 周

There are many of us who are no longer so strange. Equity and dignity. ?

Ashish Kumar

SAP Consultant - TCS | Ex - Infosys | MM/ WM / S4 HANA / SRM / Ariba | MBA (IB) - IIFT Delhi | B.Tech (ECE) - MAIT, Delhi

3 周

Raising awareness will only eventually result in finding a cure

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MARGARET YVETTE NYAMBARE

BSc, Advocate - ALARM (Anti Racism - LinkedIn) Multilingual Model - Milan ItalyProject Manager Panelist - Paris, France - FTAnglophone Countries International Business Researcher - Italy

3 周

Rare is Many!

Amber Gilkes

Creating positive awareness through better understanding- XYY Syndrome Association of Australia Inc.

2 周

Hi everyone, Where does time go, it’s been a while since I’ve spoken on this feed. I’m still here just doing life as best as I can. Our son diagnosed XYY is now 14 - we have come into teenage land!! Keeping my focus at home has been a priority in these tricky times. ?? I wanted to share something very special that just happened 4am today, I was invited to share a little about our XYY journey on Zoom call in Argentina alongside some amazing people advocating for XYY Syndrome. 2025 Rare Disease Day We had an incredible international zoom making connections around the global Argentina Association Spain Association Italy Association and here in Australia Association #XYYSYNDROME #xyyaustralia https://xyyaustralia.org #rarediseaseday

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Fatma Zohra Lalami

Médecin spécialiste chez Ministere de la santé

3 周

J’accepte

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David Roockley

CFO, Strategic,Finance Business Partnering,Strategic Program Leadership,Financial Agility,Innovative Leader,Collaborative Partner,Process Excellence, FP&A Director, Specialist in Pharma Start Ups, Venture Capitalist

2 周

Have a lot of friends struggling and suffering ,keep the great ?? work going ,

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Lisa Davis Budzinski

Patient Perspective 37+ yrs Lived Experience as Caregiver, Paralegal Specialist in Criminology, legal & health research, BMJ reviewer, rare disease & intractable pain advocate, Dx w/Central Pain & Stiff Person Syndromes

3 周

Dadgummit! I live in that country ! ??

A risk (not chance) in X 1000 of having a rare disease. But when you have it... it's 100% ?

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