Eva Bearryman

[EURORDIS-Rare Diseases Europe @eurordis]

New - our #RareBarometer survey infographic on #raredisease perspectives on data sharing and data protection is now available in 23 languages
Find the infographic in your language here: https://t.co/psKQVOtSpM

With over 2000 results across 66 countries.

[EURORDIS-Rare Diseases Europe @eurordis]

Missed a session during the European Conference on Rare Diseases & Orphan Products online last week? You can access recordings of all sessions for 1 YEAR via the platform.
Didn't quite register in time? You'll be able to register to access all recordings (coming soon!) #ECRD2020

[EURORDIS-Rare Diseases Europe @eurordis]

That's a wrap #ECRD2020
Thank you 1,500 attendees from 57 countries
Yet again we prove ALWAYS #StrongerTogether

(So many of you shared so many wonderful photos, the below is just a drop in the ocean 😉)

[EU Medicines Agency @EMA_News]

EMA advice: ‼️ Do not buy medicines from unauthorised websites and other vendors aiming to exploit fears and concerns during the #COVID19 pandemic. #SafetyOfMedicines

👉https://t.co/UNto2Llsxp

[EURORDIS-Rare Diseases Europe @eurordis]

#News in this morning: Gilead withdraws request for orphan designation of Remdesevir in the US: https://t.co/3zL6EOrIMn @nytimes

[Eva Bearryman @evaBmarie]

A busy day at the @Europarl_EN celebrating the upcoming #RareDiseaseDay

[EURORDIS-Rare Diseases Europe @eurordis]

Yesterday was a great day at @Europarl_EN with a great turnout for our #RareDiseaseDay Policy Event. Thank you to everyone who joined us! @tfajon @TomislavSokol @Konecna_K @Kympouropoulos @rarediseaseday

[EURORDIS-Rare Diseases Europe @eurordis]

100 days until #RareDiseaseDay 2020 on 29 February!
Find out how you can get involved: https://t.co/gFv982qOqw

[EURORDIS-Rare Diseases Europe @eurordis]

#Breakingnews! #Rarediseases included for the first time in @UN political declaration on #universalhealthcoverage adopted today. A huge milestone in our work to ensure the 300m people living with a rare disease are not left behind! #HLMUHC #HealthForAll https://t.co/PnoFMmJWXS

[EURORDIS-Rare Diseases Europe @eurordis]

New scientific paper out today in @ejhg_journal co-authored by EURORDIS, @orphanet & Orphanet Ireland confirms 300 million people living with a #raredisease worldwide. https://t.co/kmpBK2iOPB

[Eva Bearryman @evaBmarie]

Long-awaited data confirms that there are an estimated 300 million people living with a #raredisease worldwide. No one can deny the significance of the global rare disease population anymore #LeaveNoOneBehind

[EURORDIS-Rare Diseases Europe @eurordis]

New scientific paper out today in @ejhg_journal co-authored by EURORDIS, @orphanet & Orphanet Ireland confirms 300 million people living with a #raredisease worldwide. https://t.co/kmpBK2iOPB

[EURORDIS-Rare Diseases Europe @eurordis]

Don’t delay - nominate a rare disease star for a EURORDIS #BlackPearl Award to honour their outstanding achievements in the field of rare diseases! Nominate a person, organisation or company today! #EURORDISAwards2020 https://t.co/v1tFcPjfen

[Eva Bearryman @evaBmarie]

#New #RareBarometer survey results - rare disease patients are willing to share their health #data but want control over how and why their data is being used in research

[EURORDIS-Rare Diseases Europe @eurordis]

The first multi-country survey on data sharing & protection carried out by #RareBarometer shows that #raredisease patients are willing to share their data while wanting to retain control of how and why data is used. Read the results & recommendations: https://t.co/g0fDK8EZU8

[Eva Bearryman @evaBmarie]

#ProtectERNs so that people living with a rare disease in the UK also reap the benefits of European Reference Networks post Brexit https://t.co/ZuOwuuwata #ERNEU @EU_Health

[Genetic Alliance UK @GeneticAll_UK]

Allison Watson, co-founder of @Ring20UK and co-chair of @EpiCARE_ERN’s patient advisory group (ePAG) writes on the benefits European Reference Networks (ERNs) provide for rare disease patients across Europe. Read her blog here https://t.co/rJIouyvLap #ProtectERNs

[EURORDIS-Rare Diseases Europe @eurordis]

.@DrTedros Director-General of the World Health Organization @WHO supporting the global #raredisease community! #HealthForAll

[EURORDIS-Rare Diseases Europe @eurordis]

Results of a survey conducted through the EURORDIS #RareBarometer Programme found that 73% of women caring for a person living with a rare disease had to reduce or stop their professional activities due to their carer responsibilities #IWD2019 #WomensDay https://t.co/tkHzmrhOsr

[Rare Disease Day @rarediseaseday]

Today is #RareDiseaseDay 2019!
Watch & share the official Rare Disease Day 2019 video to see Lorena's story of living with Phelan-McDermid syndrome. #ShowYourRare @TheMightySite @BBCWorld @EU_Health @EU_Commission @V_Andriukaitis @bbcstories @BBCNews

[Rare Disease Day @rarediseaseday]

Out now - New official #RareDiseaseDay 2019 video! Watch and share Filip and Alina's story. Filip is from Romania and lives with #achondroplasia. Share the video to raise awareness of rare diseases! #ShowYourRare

[Eva Bearryman @evaBmarie]

One of the perks of my job - meeting the families living with a rare disease that will feature in the @rarediseaseday 2019 videos! #ComingSoon

[Rare Disease Day @rarediseaseday]

Live from #Madrid - filming of the 3rd #RareDiseaseDay 2019 video! Big thanks to Lorena, her brother Victor, their family, @FEDER_ONG and @PhelanMcDermid We can’t wait to share the videos with you in the lead up to 28 February!

[EURORDIS-Rare Diseases Europe @eurordis]

What is it like to live with a rare disease? Submit a photo that answers this question to the EURORDIS #BlackPearl Photo Award 2019! Deadline 7 January #EURORDISAwards2019 https://t.co/cm99fXDkea

[European Commission @EU_Commission]

Millions of Europeans suffering from one of the many rare diseases will have a new hope for improved diagnostics and better treatments and care.
We are launching a €100 million partnership to boost research. 🔬🧬
→ https://t.co/xDtFAIAexX #EUprotects