#RareDiseases, global #access; care, diagnosis, medicines. My own tweets
Italy
Joined April 2018
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It's #RareDiseaseDay #RDD2023! What is a Rare Disease? Check out the @rarediseasesint video youtu.be/Y7-fnM5FPQY
Mary Wang retweeted
🚨 Call for experts: IRDiRC seeks experts to support 5 new activities in rare diseases research :
🔹Preventive Medicines
🔹Regulatory Convergence
🔹Youth Engagement
🔹Stigma
🔹Bridging Diagnostics & Therapies
📅 Apply by Feb 9, 2025
For details : irdirc.org/call-for-members-…
Mary Wang retweeted
معًا، يمكننا إحداث فرق 🌍✨
على الرغم من ندرتها فإن الأمراض النادرة مازالت تؤثر على ملايين الأشخاص حول العالم، ولكنها مع الأسف تبقى غالبًا غير مشخصة أو بدون رعاية طبية مناسبة.. مع كونها لها تأثيرات بالغة على الأفراد والعائلات والمجتمعات.
Mary Wang retweeted
The high cost of health services is the primary reason people miss out on essential health care. These costs often force families to choose between paying for medicines or a visit to the doctor and other necessities, such as food, housing and education. #FinancialProtection101
Mary Wang retweeted
The Photo Award is back!💥#EURORDISAwards2025
This annual contest showcases the unique stories within the rare disease community through the power of photography. Entries are now open for the 2025 edition - learn more about how to get involved! ⬇️
📸eurordis.org/black-pearl-awa…
ALT Graphic displaying last year’s winning entry of a young boy in a wheelchair sharing a hug with his dog. Text reads "Photo Award 2025 Now Open", with #EURORDISAWARDS2025 under.
Mary Wang retweeted
The International Rare Disease Consortium proudly supports the World Health Assembly (WHA) Resolution on Rare Diseases. 🦯
Read the Position Statement: irdirc.org/irdirc-position-s…
@rarediseasesint @WHO
Mary Wang retweeted
🚨 New IRDiRC Publication Alert! 🚨
"The State-of-the-Art of N-of-1 Therapies and the IRDiRC N-of-1 Development Roadmap" is now published in Nature Reviews Drug Discovery.
Read the article here: nature.com/articles/s41573-0…
Today is CACNA1C Awareness Day, 1 Oct. Take a look at the awareness video and faces of the community @tsa_charity #PLWRD #Rare #Awareness
Mary Wang retweeted
It was a pleasure to be part of @rarediseasesint's webinar calling for a WHA Resolution on Rare Diseases in 2025. This commitment could boost access to care, drive research, raise awareness, and create smarter, more inclusive healthcare for all people living with a rare disease.
Mary Wang retweeted
Exciting news! A new IRDiRC paper on "Global health for rare diseases through primary care" is now available in @LancetGH. Discover how primary care plays a vital role in rare disease management and the future of genetic screening. 🌍👩⚕️👨⚕️ Read more: sciencedirect.com/science/ar…
Mary Wang retweeted
#HTAi2024Seville workshops kick off with @HTAiOrg Rare Disease Interest Group reviewing difficulties of developing medicines for #rarediseases that lead to #HTA challenges
Mary Wang retweeted
🚀 Breaking News! 🚀
🌍 Today the new SCN8A guidelines debut in Epilepsia! 🎉 Share these guidelines to help reach healthcare providers. bit.ly/3wRMxnw Crafted through a global consensus, empowering doctors and families with the latest insights on SCN8A. Please share!
Mary Wang retweeted
The Joint Action #JARDIN & #ERNs conference starts tomorrow!
Our goals:
📣raise the awareness of the #JointAction and #RareDiseases
⚕️support the integration of ERNs into national health systems paving the way for their future sustainability
Questions: shorturl.at/gDIPY
Mary Wang retweeted
Tomorrow is #RareDiseaseDay! Join the Global Chain of Lights! 🌍
The rare disease community will unite to spread solidarity with monuments, offices, schools, and homes lighting up in the Rare Disease Day colours!
Don't miss out on Feb 29, 7 PM local time!
#LightUpForRare
Mary Wang retweeted
Equity for rare diseases in 🇰🇪means Yara thrives with the best quality of life
It empowers her parents to care for her while leading fulfilling lives, contributing to society & the economy.
Your support in raising awareness gives our community recognition & drives policy action
Mary Wang retweeted
Today is #SocialJusticeDay!
The 17 #GlobalGoals are a universal call to action for social justice, to end poverty, protect the planet, and ensure that by 2030 all people enjoy peace and prosperity.
➡️ go.undp.org/SDGs
Mary Wang retweeted
Our co-founders @rokanja and @cmutena representing at the @rarediseasessa #RareX2024 conference in J'burg.
We (as a founding member of Africa Rare Diseases Alliance #ARDA), are working towards a cohesive & vibrant community for PLWRDs on the continent.
#RareDiseaseKE – at Johannesburg, South Africa
Mary Wang retweeted
📢 Read now (open access) the @irdirc paper, "Drug Repurposing for Rare: Progress and Opportunities for the Rare Disease Community". Dive into the latest insights from the IRDiRC Task Force on lessons learned and emerging trends in drug repurposing.
🔗frontiersin.org/articles/10.…
Mary Wang retweeted
On #RareDiseaseDay, we at @rarediseasesint, the global umbrella organization for PLWRD, will highlight the achievements of our members through an exciting new project.
Follow us for updates: @rarediseasesint
And you, what are you going to do for Rare Disease Day?
Mary Wang retweeted
📢 The #CHMP recommended 7 new medicines for approval, including:
☑️ 1st #CRISPR/Cas9 therapy to treat #SickleCellDisease & #BetaThalassemia
☑️ a medicine for #FriedreichsAtaxia
☑️ a medicine to treat #Schistosomiasis outside the 🇪🇺
europa.eu/!Qw3KK4
Universal Health Coverage ensures everyone can access quality health services without financial hardship. People living with a #RareDisease have specific medical & social needs and must be included in #UHC. Leave no one behind! #UHCforPLWRD
#HealthForAll #PLWRD
