A student society dedicated to raising rare disease awareness and improving the lives of rare disease patients.
Joined December 2017
- Tweets 47
- Following 139
- Followers 102
- Likes 58
12 Photos and videos
Pinned Tweet
1 Mar 2018
A massive thank you to all the delegates and speakers who braved the cold to come to our event! We also thanks @BCH_Rare and @Bham_Childrens for giving us the chance to put on #RareDx2018 #StayAwareofRare #RareAware
1
1
12
BhamRareSoc retweeted
28 Oct 2019
I was diagnosed with #childhoodcancer stage III Wilm’s tumor when I was four years old. I received a nephrectomy, full abdominal and pelvic radiation, and a year and a half of chemotherapy including #vincristine. You all knew this was coming.... thread 👇🏻 #cancermeds4kids /1
43
976
1,797
BhamRareSoc retweeted
31 Aug 2019
In the event of a “no deal” Brexit some of the UK’s most vulnerable, especially children with rare diseases, may lose access to the best medicine available, say @StuartElborn @MarkFlear and @DrDamianDowney blogs.bmj.com/bmj/2019/07/19…
10
131
80
BhamRareSoc retweeted
13 May 2019
.@RCPCHPresident welcomes delegates to #RCPCH19 and outlines 3 key areas conference will focus on:
Recruitment & retention in the paediatric workforce 👨⚕️ 👩⚕️
Establishing an equality & diversity panel 🤝
Paediatrics 2040 planning for the future 💫
10
26
BhamRareSoc retweeted
13 May 2019
Congratulations @DrMikeFarquhar who is the @RCPCH_and_Us Voice Champion of the year 2019, chosen by young people for his work on the @RainbowNHSBadge and working with @CBYouthVoice on the Rainbow Youth Supporters pack- rcpch.ac.uk/rainbow-youth-su… Congrats Mike! #RCPCH19 #Paedsrocks
3
22
101
BhamRareSoc retweeted
13 May 2019
This week's #MysteryDiseaseMonday is featuring NEUROFIBROMATOSIS TYPE 1 for #neurofibromatosisawarenessmonth @ChildhoodTT Have you heard of it❓❔❓Go to our #instastory to take the poll! #DareToThinkRare #RareDisease
2
7
BhamRareSoc retweeted
25 Jan 2019
Utter devastation of the role the UK was playing in #ERNs. From leading 6/24 to not participating at all. There is so much more to #Brexit than meets the eye- here a direct hit on health of people with #RareDisease. @sarahwollaston @NHSvBrexit
25 Jan 2019
The Government have confirmed that if we leave the EU without a deal, the UK will cease to participate in European Reference Networks (ERNs). Professor Faisal Ahmed (Office for Rare Conditions, Glasgow) writes on the impact to UK healthcare: ow.ly/sLIP50kkj8V #ProtectERNs
1
30
22
BhamRareSoc retweeted
16 Jan 2019
@takethat @GaryBarlow @HowardDonald @JaytOrange @OfficialMarkO @Robbiewilliams My mum & whole world Eileen has been the biggest Take That fan for the past 30 years & has been every one of your tours (some more than once!) Sadly... #comeoneileen #comeontakethat #itonlytakesaminute
30
341
247
BhamRareSoc retweeted
12 Dec 2018
Your arrogance and pandering to UKIP created this national crisis. Instead of offering advice, you should offer an apology for the enormous damage you have done to this country.
12 Dec 2018
I hope Conservative MPs will back the PM in the vote today. We need no distractions from seeking the best outcome with our neighbours, friends and partners in the EU.
201
1,909
7,828
BhamRareSoc retweeted
5 Jul 2018
To celebrate 70 years of the #NHS, we've created a timeline to illustrate how genetics and #genomics in healthcare has evolved over the past seven decades, and will continue to! #NHS70 socsi.in/SzlS3
1
176
207
BhamRareSoc retweeted
12 Jul 2018
Join us as we celebrate the 1st ever International #ANEawarenessday. Find out how you can help to raise awareness of #AcuteNecrotizingEncephalopathy aneinternational.org/ane/awa… @SimonRStones @RareBham @camraredisease @rarediseasesind @Rare_Neu
4
5
BhamRareSoc retweeted
31 May 2018
Spontaneous Coronary Artery Dissection: "not your typical heart attack" - Dr Adlam. Usually affects young women without usual RFs. Find out more @beatscaduk are holding a conference on 9th June @qehbham #chestpain #SCAD #MedEd #Doctors #MedicalStudent beatscad.org.uk/conference-2…
1
3
6
1 Mar 2018
Mariam al-Attar, winner of the @findacure_fdn student voice essay competition, raising awareness of the difficulty of procuring rare disease treatment #rareaware #TRAPS #RareDx2018
2
7
15
BhamRareSoc retweeted
1 Mar 2018
The Star Appeal video about the new rare diseases centre for children always inspires me. Watch it now and #DareToThinkRare @Bham_Childrens @RareBham youtu.be/99EpYxYc-7w
2
3
1 Mar 2018
Thank you to all the delegates and speakers who braved the cold to come to #RareDx2018 and defeat the #beastfromtheeast #RareAware
Great talks are now underway!
4
BhamRareSoc retweeted
28 Feb 2018
.@David_Cameron today is #RareDiseaseDay - join us in raising awareness that collectively rare diseases are not that rare. #1in17 people will be affected by one at some point in their lives.
5
69
79
BhamRareSoc retweeted
28 Feb 2018
Do you know someone with a disease so rare that it remains #undiagnosed? 6000 children are born every year with a Syndrome Without a Name, more info here - undiagnosed.org.uk/ #RareDiseaseDay2018 @thismorning @vicderbyshire *GG
7
7
28 Feb 2018
Celebrate #RareDiseaseDay by signing up to a day of rare awareness tomorrow at @Bham_Childrens! Last minute sign-ups still open! #RareDx2018 #RareAware
2
8
26 Feb 2018
With less than 5 days until our 01/03/2018 conference, last minute sign-ups are still welcome! Celebrate rare disease week by a great day of stellar talks from speakers from the UK and beyond! #RareDx2018 @S4RareDiseases @Bham_Childrens @MidRCGP @rarediseaseuk
2
2
19 Feb 2018
With less than 2 weeks to go to the event, we hope you will join us some incredible talks! A massive thank you to all those who have already signed up! @S4RareDiseases @MidRCGP @RCPCHtweets @BCH_Rare @Bham_Childrens @rarediseaseuk
8
12