BhamRareSoc

A student society dedicated to raising rare disease awareness and improving the lives of rare disease patients.

[BhamRareSoc @RareBham]

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

[Maggie Rogers @magthenomad]

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

[The BMJ @bmj_latest]

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 https://t.co/FJmIXg0Qw3

[RCPCH @RCPCHtweets]

.@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 💫

[RCPCH_and_Us @RCPCH_and_Us]

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- https://t.co/RNLx96B1nz Congrats Mike! #RCPCH19 #Paedsrocks

[MedicsforRareDisease @MedicsForRare]

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

[BhamRareSoc @RareBham]

@KawasakiFund Hi, We’re working with @M4RareDiseases to create a blog and webinar about Kawasaki’s disease. Could I drop you a dm to ask for a bit of help with it? Any help appreciated!

[Katie Bushby @BushbyKate]

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

[Lauren O'Donnell @odonnell_lauren]

@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

[David Lammy @DavidLammy]

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.

[Genomics Education @genomicsedu]

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 https://t.co/R9MFoBmCCS

[ANE International @aneinternationa]

Join us as we celebrate the 1st ever International #ANEawarenessday. Find out how you can help to raise awareness of #AcuteNecrotizingEncephalopathy https://t.co/Sd8nEzdzPe @SimonRStones @RareBham @camraredisease @rarediseasesind @Rare_Neu

[MedicsforRareDisease @MedicsForRare]

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 https://t.co/x816vSsQQh

[BhamRareSoc @RareBham]

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

[MedicsforRareDisease @MedicsForRare]

The Star Appeal video about the new rare diseases centre for children always inspires me. Watch it now and #DareToThinkRare @Bham_Childrens @RareBham https://t.co/DYXofGSiHx

[BhamRareSoc @RareBham]

@crayonlegs Sarah Lippett speaking about her experiences of rare diseases, expertly illustrated as always #rareaware #patientperspective

[BhamRareSoc @RareBham]

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!

[Rare Disease UK @rarediseaseuk]

.@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.

[SWAN UK (syndromes without a name) @SWAN_UK]

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 - https://t.co/fVKrr8YG4i #RareDiseaseDay2018 @thismorning @vicderbyshire *GG

[BhamRareSoc @RareBham]

Celebrate #RareDiseaseDay by signing up to a day of rare awareness tomorrow at @Bham_Childrens! Last minute sign-ups still open! #RareDx2018 #RareAware