David Rose

Owner of an ultra-rare Disease 🦓
Working in rare disease at: @rarerevolutionm 🧬
Volunteer for @goshcharity

[MitrofanoffSpt @MitrofanoffSpt]

Do you fancy a life changing challenge?

Mitrofanoff Support has ONE space in the Virtual London Marathon on the 3rd of October available.

Email [email protected] if you are interested!

[Charlotte Proud @proudcharlotte1]

Thanks so much for all the amazing messages/support! I’ve decided that I’m going to run the Great North Run + the Yorkshire Marathon to raise money for @SBRFoundation (in memory of my friend Nicholas, who died from Leukaemia and would have also been 30 this year)💫🙌🏻 #nevergiveup

[RARE Revolution Magazine® @RareRevolutionM]

We asked Catherine to name just one thing she loves about working for RARE Rev! 👇

#workanniversary #anniversary #years #congratulations #thankyou #celebrate #work #grateful #workcelebration #employeeappreciation

[Beacon for Rare Diseases @RareBeacon]

Nominate an individual or organization for a 2021 RARE Champions of Hope Award from @GlobalGenes!

Nominate those working in:

🏆 Advocacy
🏆 Medical Care & Treatment
🏆 Industry
🏆 And more!

Nominations close Mon, August 9, 2021 at 11:59 PM ET

👉 https://t.co/PNVQm3Gd8P

[RARE Revolution Magazine® @RareRevolutionM]

Rachel Radomski is senior director of patient advocacy at @HarmonyBio. She talks to RARE Revolution about how patient advocacy is at the heart of everything they do and about how proud she is to help elevate the patient voice. Open here:
https://t.co/LLqdITAOne
#Advocate

[RARE Revolution Magazine® @RareRevolutionM]

Something Daisy loves about her role at #RARERevolution.....
👏
#workfamily #hardwork #companyanniversary #happy #dedication #companycelebration #companybirthday #happyanniversary #workfun #companymilestone #teamwork #team #happybirthday #employeeanniversary #workiversary

[Amiculum @Amiculum_global]

Privileged to be joined by @davidrose88 as part of our 20th anniversary celebrations. David has an ultra-rare disease, Occipital Horn Syndrome - he spoke candidly about his diagnosis + management and the impact this has had on himself and his family. A truly inspiring session!

[Beacon for Rare Diseases @RareBeacon]

Apply for #RareAsOne funding by @ChanZuckerberg before 2nd June for a 3 year #Grant opportunity to support the development and/or expansion of a patient-led collaborative research network!

20 #US-based grantees will be awarded up to $600,00 over 3 years

https://t.co/2pVmJJPsjC

[RARE Revolution Magazine® @RareRevolutionM]

'Spring is the perennial season of hope and new beginnings, and it is fair to say that this edition is brimming with both.' Nicola Miller, Editor-in-chief. Open #RAREBones here: https://t.co/dwAX7pHKgy

@IpsenGroup
#BoneHealth #Magazine #New #HealthCare #BoneDisorders #Bones

[David Rose @davidrose88]

My rare disease conversation with my friend Lucy from @M4RareDiseases is live.

If you’re looking for some Sunday morning viewing - look no further 😊

https://t.co/1x3AK4NaZJ

#IAmNumber17 #RareDisease #OccipitalHornSyndrome

[Prabh Kaur @prabhjotrimpy]

Changemaker of the week. @davidrose88 Sharing his experience with living with ultra-rare disease OHS for the #iamnumber17 campaign.

[RARE Revolution Magazine® @RareRevolutionM]

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

[David Rose @davidrose88]

It’s my week for the @TakedaPharma #IAmNumber17 project. I’m very passionate for men to talk about their rare disease. I really enjoy speaking about my ultra-rare condition - Occipital Horn Syndrome.

#RareDisease #OccipitalHornSyndrome #PatientAdvocacy

[David Rose @OccipitalHDavid]

@Ataxia_and_Me Thanks Alan 😊

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

Checkout the #IamNumber17 #campaign helping the voices of those with #rarediseases be heard,
this week we hear from @OccipitalHDavid ~
View @ https://t.co/DYCudkaB3C

[RARE Revolution Magazine® @RareRevolutionM]

''When reading through you get a real sense of belonging, like this really is a place for all RARE families, where our daily struggles are not sugar coated but where our achievements really are achievements! It really is a beautiful thing''
https://t.co/sUTwBcdSvW
#SubscribeNow

[RARE Revolution Magazine® @RareRevolutionM]

This week is #SignLanguageWeek the RARE Rev team are enjoying learning how to sign. You can get involved and raise awareness by learning basic sign language with your friends and family https://t.co/ueMI4M2756 have some great resources to help you get started! #BSL #deafawareness

[RARE Revolution Magazine® @RareRevolutionM]

After an established career in multinational pharmaceuticals, Kamel Ghammachi and Karim Smaira asked themselves two very important questions, igniting a spark that led to their next career challenge...
https://t.co/gg2hSpPVxX
@genpharmmena
#RareDisease #MENA #Career #Patients

[RARE Revolution Magazine® @RareRevolutionM]

When Lousin Mehrabi's son was diagnosed with a rare disease, she began harnessing her love for speaking and writing she shares her story with others, shining a little light for other people going through a difficult time.
Read here:
https://t.co/p960M3RCu4
#RareDisease #hope

[RARE Revolution Magazine® @RareRevolutionM]

For #InternationalWomensDay2021 the team at RARE Rev are showing their appreciation for the two women that show their dedication and passion for helping others everyday! Rebecca Stewart and Nicola Miller co-founders Rare Revolution Magazine and movement. #ChooseToChallenge