Jenny Steele

This #RareDiseaseDay, 43 MEPs have co-signed a letter to @vonderleyen calling for a new European Action Plan on Rare Diseases on behalf of the 30 million people living with a rare disease in Europe! Learn more: cutt.ly/H8hKazw #LightUpForRare #ShareYourColours

@SallyGreenbrook You got your wish! 😅

My son's school closes early today and I need to pick him up at 2pm. So I need Liz Truss to start very soon and speak fast.

The moment my @bbcukrainian colleague @Yollika sees pictures of her family home, partially destroyed overnight in #Kyiv. We did not know until that moment it was her actual building that had been hit. Thankfully Olga’s family is safe.

Chile and @gabrielboric on the front page of tomorrow’s Guardian!

Mind-blowing scenes in Santiago, where hundreds of thousands have flocked onto the streets to celebrate Gabriel Boric's victory

This morning we met with Members of the @Europarl_EN to discuss the upcoming debate on Europe’s Action Plan on Rare Diseases, taking place tomorrow at 20:00 CET. We thank you for your support and look forward to bringing about change for people with rare diseases together!

Had the pleasure of moderating a panel of investors at the Moscow Exchange International Forum last night, discussing private equity and exciting business models in Russia.

Something about the headset and the hand gestures always makes me think my dad looks like he’s in the middle of some kind of rap in this picture. Swap the lanyard for a chain? Not really his style - but this event absolutely is. A wonderful tribute to an exceptional man 💙

¡HISTÓRICO ORO! ¡ORO! ¡ORO! 🥇😭🇪🇨 ¡RICHARD CARAPAZ LE DA A ECUADOR LA MEDALLA DE ORO EN LOS JUEGOS OLÍMPICOS DE TOKIO! ¡ERES EL NÚMERO 1 ‘MIJÍN’! 💛💙❤️👏👏👏 » bit.ly/3iI17CP

@BreastCancerNow Amazing news! Congrats to everyone involved! 💖

📢 We did it! We've secured a secondary breast cancer audit from NHS England – to better understand the experiences of those with a secondary diagnosis. Thank you to everyone who supported our campaigns to make this audit a reality. breastcancernow.org/about-us/news-…

Independence 🆓 Empowerment 💪 Ability to fulfill your potential 👩‍💼 These are the qualities that Rebecca, a EURORDIS patient advocate, wants for all people living with a rare disease by 2030 Read Rebecca's inspiring plea and support her in her demands!📣l.eurordis.org/naD

📢 NEW! The official #RareDiseaseDay video is out NOW 🎉Watch the 6 real life stories and be inspired to join the 2021 campaign. 👥 Share this post with your followers using this hashtag #RareDiseaseDay

❄️🐼 Slides, somersaults and pure panda joy. Happy snow day from giant pandas Mei Xiang and Tian Tian! 🌨🐾 . . . #SnowDay #PandaStory

@melsturtevant Was thinking of you! ❄️❄️❄️

Finally! SNOW

For the first time EURORDIS, alongside its members, have set out 11 Key Principles for #NewbornScreening 👣 These principles will support an harmonised European approach to NBS that will help to reduce vast inequalities across Europe. 👉 eurordis.org/newbornscreeni…

During the @rare2030 final event we will present the #Rare2030 recommendations for a new policy framework for #rarediseases in Europe! 🇪🇺 📅 23 February 2021 (13.30 – 18.30 CET). 📍Fully ONLINE 📝 Register NOW: rare2030.eu/key-events/feb…

Today we launch our recommendations for European Reference Networks by 2030!🇪🇺 Our vision is for a mature ERN system that leaves no person with a #raredisease in uncertainty regarding their diagnosis, care & treatment. Read the paper here 👉 eurordis.org/maturevisionern

Red Square this morning, before the snow clearers descended.

@BreastCancerNow @Jochurchill4 Great to hear! 🎉🎉

Encouraging to see the Minister speak positively about a National Secondary Breast Cancer Audit – something we have been calling for in our Secondary and Spending Review campaigns. Thank you @Jochurchill4 - We stand ready to support this work.

🚨 Out NOW: the results of the EURORDIS #COVID19 survey! 83% of #raredisease patients’ care was disrupted during the first wave of the COVID-19 pandemic. Including treatments, rehabilitation, surgeries & transplants 🏥 👉 Full results: download2.eurordis.org/rbv/covid19sur…