RARE Revolution Magazine @RareRevolutionM Twitter profile

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RARE Revolution Magazine

6 days

We're delighted to launch our Autumn4 issue of RARE Revolution Magazine. Sponsored by @ucb_uk this edition, RARE Mitochondria dives into the fundamental role of #mitochondria in our health. Read the full issue here: #RareDisease #MitochondrialDisorders

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RARE Revolution Magazine

@RareRevolutionM

2 years

Today is Rare Disease Day and it’s a day to raise awareness for the 300 Million people in the world with over 6000 rare diseases. If you or a loved one have a rare disease write it in the comments and make it seen. #RareDisease #RareDiseaseDay #RareDiseaseDay2023

All On The Board

@allontheboard

2 years

Today is Rare Disease Day and it’s a day to raise awareness for the 300 Million people in the world with over 6000 rare diseases. If you or a loved one have a rare disease write it in the comments and make it seen. #RareDisease #RareDiseaseDay #RareDiseaseDay2023

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RARE Revolution Magazine

@RareRevolutionM

5 years

A big week ahead in the #RareDisease community... #RareDiseaseDay2020 🦓🧬

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RARE Revolution Magazine

@RareRevolutionM

6 years

To celebrate #RareDiseaseDay we are thrilled to launch our first Rare Disease Day Special Edition. We have loved sharing the winning photograph from this year's @eurordis Photo Award DEEP as our front cover. #CFCSyndrome #RareDiseaseDay #rarerevolution

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RARE Revolution Magazine

@RareRevolutionM

1 year

What Rare Disease do you advocate for? Let us know in the comments. #TuesdayTakeover #RareDiseaseNigeria #rarediseaseng #rarediseaseadvocacy #rarerevolutionmagazine

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RARE Revolution Magazine

@RareRevolutionM

5 years

Today it is Rare Disease Day, we asked our Charity Partners, "What does rare disease day mean to you?" We will post their replies throughout this very special day on the rare disease calendar #RareDiseaseDay

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RARE Revolution Magazine

@RareRevolutionM

8 months

Today we raise awareness and ignite change for the 300 million individuals worldwide living with a #raredisease . One of these diseases is r(20), which falls into the 5% or >6,000 ultra-rare conditions. Pls share this post… Let's spread awareness together. 💜 #RareDiseaseDay

Ring20UK

@Ring20UK

8 months

Today we raise awareness and ignite change for the 300 million individuals worldwide living with a #raredisease . One of these diseases is r(20), which falls into the 5% or >6,000 ultra-rare conditions. Pls share this post… Let's spread awareness together. 💜 #RareDiseaseDay 🧬

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RARE Revolution Magazine

@RareRevolutionM

8 months

What #RareDisease do you advocate for? Let us know in the comments... #RareDiseaseAdvocacy #RareDiseaseAdvocates

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RARE Revolution Magazine

@RareRevolutionM

6 years

Hot off the press (so to speak), our summer issue front cover featuring @LostVoiceGuy winner of @Brit_got_talent - make sure you sign-up to receive our free digital #raredisease publication. Join the #RareRevolution

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RARE Revolution Magazine

@RareRevolutionM

4 years

We are excited to announce the launch of the RARE Youth Revolution movement, along with its new online home . Empowering and connecting children and young people affected by rare conditions so that they know they are not alone. #RAREYouthRevolution

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RARE Revolution Magazine

@RareRevolutionM

1 year

We're partnering with @Clinigen . Together, we’re designing a training programme to help patient organisations understand how medicines access works. Take part in our survey and help us understand the educational needs of your organisation. Learn more:

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RARE Revolution Magazine

@RareRevolutionM

5 years

Attention: RARE disease community! Come and join the RARE Revolution, it's time to talk about the zebra in the room! #RareDisease #Healthcare #MedicalZebra #PatientGroups #PatientAdvocacy #TheZebraInTheRoom #RARERevolutionMagazine

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RARE Revolution Magazine

@RareRevolutionM

8 months

Just 3 days to go until #RareDiseaseDay . Did you know there are 3.5 million people in the UK living with a rare condition? 🧬 #RareDiseaseDay2024 #RareDisease

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RARE Revolution Magazine

@RareRevolutionM

5 years

The moment you've been waiting for... edition 14 of Rare Revolution Magazine: Patients as partners edition. #RareDisease #PatientEngagement #Pharma #PatientAdvocacy

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RARE Revolution Magazine

@RareRevolutionM

3 years

Did you know that 3.5 million in the UK are affected by a rare condition? That’s 1 in 17 people! RT if you're one of them and tell us about your experiences. #RareDisease #RareDiseaseDay2022 @GeneticAll_UK @rarediseaseuk

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RARE Revolution Magazine

@RareRevolutionM

5 years

Our whole team have been supporting #RareDiseaseDay this week 🦓🦓🦓 Well done to everyone for their awareness efforts and keeping the conversations going. #CareAboutRare #RareDisease

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RARE Revolution Magazine

@RareRevolutionM

3 years

It's officially Rare Disease Day 2022. Make sure and tag us in to your posts and use the hashtags #RareDiseaseDay2022 #RDD2022 #ShareYourRare #Share4Rare #LightUpForRare and we'll be sure to share all the amazing things happening in our community 🦓❤️ @rarediseaseday

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RARE Revolution Magazine

@RareRevolutionM

5 years

What a superb idea! Well done to 12 year old Ella Casano - rare disease patient and inventor. #RareDisease #Inventor #IVBag #Patient

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RARE Revolution Magazine

@RareRevolutionM

5 years

Everyone loves a conference giveaway. One of our favourites is our @RareDiseases zebra. What are some of your favourite hauls from medical conferences? #MedicalConference #RareDisease

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RARE Revolution Magazine

@RareRevolutionM

2 years

Today is #RareDiseaseDay , so naturally we asked NORD ( @RareDiseases ), the official US partner for Rare Disease Day, to close our #TuesdayTakeover ! Follow along to learn what NORD is up to & how to #ShowYourStripes with the #RareDisease community. 🦓 #RDD2023

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RARE Revolution Magazine

@RareRevolutionM

5 years

Huge congratulations to our Editor, Nicola and our CEO, Rebecca, who through their work at @TeddingtonTrust have been awarded a #Pointsoflight award from the Prime Ministers Office. The rest of the team here are immensely proud of you both!

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RARE Revolution Magazine

@RareRevolutionM

3 years

#RAREandEquitable has launched! Explore #diversity , #equity and #inclusion in the context of #RareDisease . Open here 👇 @TravereRare

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RARE Revolution Magazine

@RareRevolutionM

4 months

From BBC News: Celine Dion diagnosis helps people with rare disorder. Celine Dion's decision to speak about her struggle with a rare neurological disorder. #StiffPersonSyndrome , has helped others affected, believes one man living with it. Read at

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RARE Revolution Magazine

@RareRevolutionM

5 years

Patient groups are so important 👏🏻👏🏻👏🏻 #RAREsummit19 #RareDisease

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RARE Revolution Magazine

@RareRevolutionM

8 months

We've been working with patients, families & clinicians to develop a health & care #RareDisease passport template to help communicate key medical & care information. The phase 2 report is just out! @camraredisease #RareDiseaseDay2024 #RareDiseaseDay #RDD2024 #RDD

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RARE Revolution Magazine

@RareRevolutionM

5 years

Loving the @RareDiseases zebra from the @orphan_drugs last week. A great addition to the desk 🦓 #RareDisease #wodc2019

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RARE Revolution Magazine

@RareRevolutionM

3 years

We know this feeling well. #Share4Rare #RareDiseaseDay #RareDiseaseDay2022 #RareDisease

Effie Parks

@OnceUponAGene

3 years

#RareDiseaseTruth

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RARE Revolution Magazine

@RareRevolutionM

6 years

Congratulations to our own RR founders Rebecca Stewart and Nicola Miller Gelati in being awarded at this years British Medical Association 2018 Patient Information Award for their work on the educational...

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RARE Revolution Magazine

@RareRevolutionM

5 years

This is going to be fantastic for the #RareDisease community. It brings Gosh doctors and University College London researchers under one roof and will use genetic screening to discover the molecular basis of rare or complex childhood conditions.

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RARE Revolution Magazine

@RareRevolutionM

2 years

On #RareDiseaseDay RARE Revolution Magazine will be raising awareness for the rare community. Check out @RareDiseases on February 28 to join the celebration. Learn how you can #ShowYourStripes :

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RARE Revolution Magazine

@RareRevolutionM

5 years

A big hello to our new followers 👋🏻🦓 Thanks for following! Let’s keep the rare disease awareness going 👍🏻 #RDD2020 #RareDisease #RareDiseaseDay

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RARE Revolution Magazine

@RareRevolutionM

4 years

We are sharing our first EVER geographical spotlight edition shining a light on the MENA and GCC region! This #RareDiseaseDay2021 special captures the spirit of ''RARE is many, RARE is strong, RARE is proud'' as we highlight global voices. @genpharmmena

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RARE Revolution Magazine

@RareRevolutionM

5 years

Yesterday was a phenomenal day for rare disease awareness. Seeing so many stakeholders share their stories and knowledge was fantastic. #RareDiseaseDay

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RARE Revolution Magazine

@RareRevolutionM

4 years

We are proudly supporting the online campaign #Dazzle4Rare in raising more awareness for rare disease! Today is day 1 of a week full of many organisations coming together to spread awareness and information #Dazzle4Rare . Stay tuned for our shares and be sure to follow the # 🦓

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RARE Revolution Magazine

@RareRevolutionM

2 years

We have known Hannah Harpin since she was 6 years old. This week she walked in her first London Fashion Show. Hannah was born with Hay-Wells syndrome, an incredibly rare disorder that can affect the skin, hair, nails and teeth. #EctodermalDysplasia .

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RARE Revolution Magazine

@RareRevolutionM

6 months

We are delighted to launch our newest edition, #WomenInRARE , proudly supported by @AlexionPharma . We ask of you today to take this opportunity to see us, hear us, and please share this edition on behalf of the women in your lives. Read in full here:

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RARE Revolution Magazine

@RareRevolutionM

4 years

Hi! My name is Theresa and this is my son Owen, who was born with a rare disease called Beckwith-Wiedemann syndrome (BWS). Our goal today is to raise awareness for his condition, I hope you enjoy my #tuesdaytakeover today!

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RARE Revolution Magazine

@RareRevolutionM

7 years

It's here! The 1st ever RARE Revolution #RareYouthProject youth edition is OUT! All existing subscribers should now find a copy in their email inbox - if you haven't yet pop here to FREE subscribe to get your copy now!

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RARE Revolution Magazine

@RareRevolutionM

8 months

Less than two weeks to go until #RareDiseaseDay 2024 Day kicks off! With over 300 million people living today with a #RareDisease , raising awareness and generating change is essential. There is still work to be done. Find out more at

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RARE Revolution Magazine

@RareRevolutionM

3 years

This is the @NatGeo #PhotoOfTheYear . Do you see horses? Its actually shadows of a herd of Zebras. Hoofs are not always horses which is a common phrase in the #RareDisease world. It pays to look a little closer and see what is behind the shadows. #ZebraRareDisease #ThinkZebra

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RARE Revolution Magazine

@RareRevolutionM

6 years

We would love to hear from the #raredads - whether that's a rare disease patient who'd love to write a piece about how great their father has been with their rare disease, or a dad that's also a rare disease patient. Please get in touch: editor @rarerevolutionmagazine .com

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RARE Revolution Magazine

@RareRevolutionM

8 months

A friendly reminder on #RareDiseaseDay that if you only ever listen for the hoofbeats of horses, you will miss entire herds of zebras While each individual condition may be rare, in aggregate the thousands of esoteric illnesses affect millions of patients! 🦓 📷

Mark Lewis, MD, FASCO

@marklewismd

8 months

A friendly reminder on #RareDiseaseDay that if you only ever listen for the hoofbeats of horses, you will miss entire herds of zebras While each individual condition may be rare, in aggregate the thousands of esoteric illnesses affect millions of patients! 🦓 🦓 🦓

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RARE Revolution Magazine

@RareRevolutionM

4 years

RARE Epilepsy is now live and we are very excited to share our biggest edition yet! With over 130 forms of rare epilepsy it is no surprise. Thank you @Ring20UK for your support 💜 Open #RAREEpilepsy here: #epilepsy #magazine #NFP #rareepilepsy

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RARE Revolution Magazine

@RareRevolutionM

3 years

The Wonderful team over at @rarediseaseday have created a downloadable toolkit full of graphics, posters and editable documents to help you celebrate #RareDiseaseDay2022 . There is even a toolkit for schools.

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RARE Revolution Magazine

@RareRevolutionM

2 years

Next month is #RareDiseaseDay 2023! @rarediseaseday The highlight of RARE Revolution's calendar. With over 300 million people living with a #RareDisease , raising awareness and generating change is essential. For more information, visit:

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RARE Revolution Magazine

@RareRevolutionM

4 years

We are very proud to have been selected as finalists for the Written Media award! #EURORDISAwards2021 “We are for the community—by the community, in every sense of the words”. Rebecca Stewart CEO and co-founder. Vote for us here 👉

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RARE Revolution Magazine

@RareRevolutionM

3 years

A big hello from @rarediseaseuk ! We are run by @GeneticAll_UK for people with rare conditions and all who support them. Today we'll be letting you know how you can get involved in our activities for #RareDiseaseDay2022 !

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RARE Revolution Magazine

@RareRevolutionM

5 years

"Rare Disease Day is a day when as a parent of someone with a rare neurological disorder we feel less rare, less isolated – more connected!’" @RettUK #RareDiseaseDay

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RARE Revolution Magazine

@RareRevolutionM

4 years

Yay #rarediseaseday2021 . The day millions of people around the globe come together and make noise for #RareDiseaseAwareness ! Check out our #SpotlightEdition highlighting the varied rare disease landscape of the MENA and GCC region. and #Share for #rare . 🎉

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RARE Revolution Magazine

@RareRevolutionM

1 year

Raise awareness about gender bias and data disparities in #hemophilia to demand equal treatment opportunities for women and girls in your region and globally. Register for the 1st free event in the @RE_Pharma Hemophilia Changemakers 2023 Series, in partnership with @Sanofi , now

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RARE Revolution Magazine

@RareRevolutionM

4 years

Good morning all. So excited to share our Spring edition with you all: 'Professionals and Places'. Open here: A huge thank you as always to the @OPENHealth for their support! #RareDisease #Healthcare #RAREHeroes #NHS #PatientAdvocacy #PatientGroup

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RARE Revolution Magazine

@RareRevolutionM

5 years

Delighted to be kicking off the run into #RareDiseaseDay20 with our special dedicated disease edition. A big thanks to the #DuchenneCommunity for sharing their experiences.

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RARE Revolution Magazine

@RareRevolutionM

4 years

What happens in #RareDisease when there is no patient society, no support group, no community? Many people are left feeling alone in a sea of uncertainty. Find out about the families driving advocacy and research in the MENA and GCC region. #RareDiseaseDay

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RARE Revolution Magazine

@RareRevolutionM

2 years

We support @rarediseaseuk 's mission to get a Google Doodle for #RareDiseaseDay on 28 February 2023. Let's do this! All you need to do is email the @Google team with the suggestion. You can copy our template or visit . Don't forget to tell your friends!

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RARE Revolution Magazine

@RareRevolutionM

8 years

A day of inspiration & hope for #RareDisease at the @BPSUtweet Conf. #MyRareDisease @BCH_Rare @Congenica @findacure_fdn @GeneticAll_UK

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RARE Revolution Magazine

@RareRevolutionM

4 years

The team here at RARE Rev are showing off their stripes and wearing 4 rare! Have you got a favourite #RARE item of clothing or rare object you can whip out of the closet and model for this week's #Dazzle4Rare campaign? #RARERevolution #Wear4Rare #raredisease #raiseawareness

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RARE Revolution Magazine

@RareRevolutionM

4 years

We thank the @RareRevolution for spreading awareness on #PANS and #PANDAS ahead of PANS PANDAS Awareness Day 9th October. For more info visit: @PandasPans #immunology #psychiatry #Neurology #ENT #inflammation #infection #neuropsychiatry #tuesdaytakeover

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RARE Revolution Magazine

@RareRevolutionM

3 years

Today we celebrate #PatientEngagementDay ! Let's all work together to #amplifythepatientvoice ... Take a moment out of your day to read our issue dedicated to highlighting the positive power of #PatientEngagement :

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RARE Revolution Magazine

@RareRevolutionM

7 years

Great to see @BCH_Rare being acknowledged for her Wonder Women status x x x Lovely article

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RARE Revolution Magazine

@RareRevolutionM

5 years

Superb day at #RAREsummit19 - a pleasure to meet some new faces and great to connect with some new ones. Well done to all the speakers and exhibitors 👏🏻 #RareDisease

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RARE Revolution Magazine

@RareRevolutionM

5 years

Have you seen the #IAmNumber17 campaign yet? If not, check out: #RareDisease

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RARE Revolution Magazine

@RareRevolutionM

5 years

1️⃣0️⃣0️⃣ days until #RareDiseaseDay2020 - will you be doing anything to mark the occasion next year? #RareDisease #RareDiseaseAwareness

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RARE Revolution Magazine

@RareRevolutionM

4 years

1 in 17 people in the UK have a rare disease. 1 in 10 people in the USA have a rare disease. 50% of those with a rare disease are children. What are the statistics for the country you live in? 🦓🦓🦓 #MedicalZebra #RareDisease

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RARE Revolution Magazine

@RareRevolutionM

1 year

We're delighted to launch our spotlight edition on #NewbornScreening , exploring programmes in America, Europe and Australia, highlighting their vital role in society. Co-sponsored by @AlexionPharma , AstraZeneca Rare Disease, @illumina and @TravereRare .

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RARE Revolution Magazine

@RareRevolutionM

8 months

Funded by and developed in collaboration with Chiesi GRD. This Rare Disease Day we are so pleased to be partnering with Chiesi Global Rare Diseases to showcase their global initiative, ‘It’s rare for me’, elevating the voices of the rare disease community. Their programme aims to

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RARE Revolution Magazine

@RareRevolutionM

4 years

Today is #PurpleDay we are proud to share our charity partners raising awareness for different types of #Epilepsy @Ring20UK @EpilepsySparks @foundation_sgs @FundacionDravet @EpilepsyADDL Check out their channels today! 💜 #EpilepsyAware #RareEpilepsy

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RARE Revolution Magazine

@RareRevolutionM

5 years

Baroness Nicola Blackwood: We need a national debate on rare diseases to offer the best possible care. #RAREsummit19 #RareDisease #Healthcare #PatientsAsAdvocates

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RARE Revolution Magazine

@RareRevolutionM

5 years

Today is #WorldAnimalDay What’a your favourite animal? For us, it’s got to be the rare disease mascot: the zebra!

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RARE Revolution Magazine

@RareRevolutionM

7 years

A typical #RareDisease patient and how things can make you feel while searching for a #diagnosis #TakeoverTuesday

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RARE Revolution Magazine

@RareRevolutionM

4 years

Would like to takeover our social media channels for 24 hours? If you would like to raise awareness for your rare charity and rare disease then contact Catherine at cdevaal @rarerevolutionmagazine .com #tuesdaytakeover #raredisease # raiseawareness

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RARE Revolution Magazine

@RareRevolutionM

6 years

This is excellent! How did you find your experience with getting a Blue Badge?

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RARE Revolution Magazine

@RareRevolutionM

2 years

We are delighted to launch “The impact of RARE disease on sibling experience” report. Supported by @AlexionPharma and undertaken by us, the report aims to give a voice to RARE siblings. Read now : #RareDisease #Siblings #RareSiblings

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RARE Revolution Magazine

@RareRevolutionM

9 months

It's #DayOfTheZebra ! It's time to talk about the zebra in the room.🦓 FACT: The #Zebra symbol represents the community of people who live with #RareDiseases . At RARE Revolution Magazine, we spread awareness each day of the year! Visit . #RareDiseaseDay

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RARE Revolution Magazine

@RareRevolutionM

5 years

This med student was given last rites before finding a treatment that saved his life. His method could help millions: #RareDisease #MedStudent

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RARE Revolution Magazine

@RareRevolutionM

5 years

Today is #WorldPhotoDay To help us mark the day as a #RareDisease community why not share your pictures with us in the theme of #RARELovingLife and why not also share your own photos today using the hashtags Looking forward to seeing you all Loving Life 😁

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RARE Revolution Magazine

@RareRevolutionM

8 months

Celebrate #InternationalWomensDay2024 with us as we host a celebration of women in RARE disease science and research at 5.15pm GMT, 9.15am PT, 12.15pm EST. Book your free place here: #RareDisease #WomenInRare #WomenInScience #WomenInResearch

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RARE Revolution Magazine

@RareRevolutionM

5 years

Over riding theme so far at #PP2019 - Language Matters. Patients or people? Sufferers? People with Autism or Autistic People? Condition or Disease? Sensitivities that can be applied to our whole #raredisease community. What language matters to you and your community?

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RARE Revolution Magazine

@RareRevolutionM

6 years

Sneaky peek of our Winter, #RAREBloods edition, front cover featuring #ChrisBombardier @AdventureHemo Also includes insightful interview with @TheWoollard , Clinical spotlight by guest writer @lseiders3 and charity spotlight featuring @aPODDfoundation - Out end of JANUARY

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RARE Revolution Magazine

@RareRevolutionM

2 years

A mother’s mission to raise awareness of Bardet-Biedl syndrome and promote effective partnerships between carers and caregivers. #BBS #BardetBiedlSyndrome #Coproduction

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RARE Revolution Magazine

@RareRevolutionM

4 years

42% say paediatrician had never heard of #PANS or #PANDAS #2020ParentSurvey @PandasPans #arfid #ocd #tourettes #eatingdisorder #NHS #NHSE #BeMyVoice #anxiety #CAMHS #immunology #psychiatry #Neurology #ENT #inflammation #infection #neuropsychiatry #APPG #EWMHS #tuesdaytakeover

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RARE Revolution Magazine

@RareRevolutionM

5 years

All set up and ready to go at the @camraredisease #RARESummit19 #RareDisease #Pharma #PatientAdvoacy

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RARE Revolution Magazine

@RareRevolutionM

5 years

Come and long and say hello to us today and tomorrow at the Exhibition Pavilion #2019GGSummit - looking forward to meeting you all

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RARE Revolution Magazine

@RareRevolutionM

5 years

All set for the world orphan drug congress in Barcelona 🇪🇸🧬✈️ #RareDisease #OrphanDrug #Pharma #PatientAdvocacy

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RARE Revolution Magazine

@RareRevolutionM

5 years

Scientists have been working with mice to investigate possible treatment for #GRIN patients - here @kathintson discusses her work in Dr Amy Ramsey's lab at U of Toronto @ajr937 #tuesdaytakeover #GRINGeneDisorders #GRIN1 #GRIN2A #GRIN2B #GRIN2D

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RARE Revolution Magazine

@RareRevolutionM

3 years

In 7 years, the MDBR has funded $14.6M+ in #rarediseaseresearch grants. We have granted 249 awards to 102 institutions in 14 countries across the globe. No administrative overhead taken out - 100% of $ raised goes to research grants. #Rarediseases #PennMedMDBR2021

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RARE Revolution Magazine

@RareRevolutionM

4 years

35% of children have missed more than 6 months of school #PANS or #PANDAS #2020ParentSurvey @PandasPans #arfid #ocd #tourettes #eatingdisorder #NHSE #BeMyVoice #anxiety #CAMHS #ENT #inflammation #infection #neuropsychiatry #APPG #EWMHS #PatientVoice #PatientGroup #tuesdaytakeover

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RARE Revolution Magazine

@RareRevolutionM

4 years

We are looking forward to tomorrows #tuesdaytakeover from the brilliant charity @PandasPans Stay tuned!👀 #panpandasuk #awarenessmonth #panpandas #rarecondition #raredisease

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RARE Revolution Magazine

@RareRevolutionM

8 months

Join @M4RareDiseases and #ShowYourStripes for Rare Disease Day on 29 February. To get involved with the campaign, simply find some stripey socks, put them on and take a stripey, socky selfie! Find out more at

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RARE Revolution Magazine

@RareRevolutionM

2 years

Symptoms of #RareDisease can be complex, degenerative, debilitating and life threatening, which means that long-term care is usually required. #CarersWeek #CarersWeek2022 #Carers #LongTermCaregiving #UnpaidCarers

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RARE Revolution Magazine

@RareRevolutionM

5 years

#2019GGSummit @GlobalGenes Susannah Catalan #BrainonFire recounting her journey with autoimmune encephalitis

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RARE Revolution Magazine

@RareRevolutionM

3 years

It's International #EpilepsyDay as well as #ValentinesDay Did you know there are hundreds of causes of #Epilepsy and many of them are #RareGeneticEpilepsies . Many of these #Genetic causes of Epilepsy mean patients can be resistant to many treatments. #ShowSomeLove today ❤️

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RARE Revolution Magazine

@RareRevolutionM

6 months

Introducing this week’s Digital Spotlight. Sponsored by @Roche , this week we will be sharing the experiences of patients, advocacy organisations and HCPs with spinal muscular atrophy. Read more here: #SpinalMuscularAtrophy #SMA #RareDisease

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RARE Revolution Magazine

@RareRevolutionM

1 year

Hey! We’re @rarebeacon , we are so excited to be hosting this #TuesdayTakeover ! At Beacon our vision is a world in which no one face their #raredisease journey alone. We provide patient group training, community building projects and research to support the rare disease community.

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RARE Revolution Magazine

@RareRevolutionM

6 years

Cambridge Rare Disease Network kicked off the winter season with a two day festival dedicated to rare disease, with the vision of educating the general population about the science, technology and faces behind rare disease. #RareDisease #Science ...

Rare Revolution

Rare Revolution - 05/02/2019

edition.pagesuite-professional.co.uk

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RARE Revolution Magazine

@RareRevolutionM

3 years

With so little known about Lupus, Lauren Fuller is on a rare mission to raise awareness and understanding for those who, like her, live with Lupus. #WorldLupusDay

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RARE Revolution Magazine

@RareRevolutionM

2 years

Have you visited the @BBCNews rare disease page yet? Here you'll be able to read many news stories focused around #RareDiseases and #RareConditions , including those we've previously covered in-magazine and on our digital content. Visit the webpage here:

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RARE Revolution Magazine

@RareRevolutionM

5 years

Children presenting with seizures beginning under 3 mths seem to be caused by pathogenic variants that cause a gain of sodium channel function & those beginning after 3mths are caused by loss of sodium channel function. #SCN2A #takeovertuesday SCN2A Phenotypes Dr K Howell. 2020

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RARE Revolution Magazine

@RareRevolutionM

6 years

Please join us in wishing one of our @RareRevolutionM team, @davidrose88 a VERY HAPPY 30th BIRTHDAY!! Have an awesome day David x

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RARE Revolution Magazine

@RareRevolutionM

4 years

An estimated 9,642 working days were lost due to #PANS or #PANDAS #2020ParentSurvey @PandasPans #arfid #ocd #tourettes #eatingdisorder #NHSE #BeMyVoice #anxiety #CAMHS #immunology #psychiatry #Neurology #ENT #inflammation #infection #neuropsychiatry #APPG #EWMHS #tuesdaytakeover

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RARE Revolution Magazine

@RareRevolutionM

2 years

Our #RareDiseaseDay 2023 Special Edition on #HereditaryAngioedema is here. A celebration of the amazing advocates, patients and professionals working and living with #HAE . Thanks to our contributors and @BioCrystPharma for partnering on this project.

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