A student society dedicated to raising rare disease awareness and improving the lives of rare disease patients.
Birmingham, England
Joined December 2017
- Tweets47
- Following139
- Followers101
- Likes58
BhamRareSoc retweeted
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
BhamRareSoc retweeted
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…
BhamRareSoc retweeted
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
BhamRareSoc retweeted
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 retweeted
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 – at Byker, England
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
BhamRareSoc retweeted
@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
BhamRareSoc retweeted
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.
BhamRareSoc retweeted
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
BhamRareSoc retweeted
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
BhamRareSoc retweeted
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…
BhamRareSoc retweeted
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 – at Birmingham, England
BhamRareSoc retweeted
.@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.
BhamRareSoc retweeted
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
BhamRareSoc retweeted
1st March @RareBham 3.5 million ppl in the UK live with a rare disease. 75% affect children and without early diagnosis they will not get the treatments they need. Individually #rare but together #common Come and learn more #meded #medstudent #RareDx2018 facebook.com/events/15520436…
BhamRareSoc retweeted
RT @GeneticAll_UK: Are you a GP, junior doctor or medical student? Join Birmingham Rare Diseases Society and Birmingham Children's Hospital for their second annual Rare Diseases Conference on 1 March. Register here: goo.gl/forms/1kMSjswhLjuay9J… @BCH_Rare @Bham_Childrens #raredisease
BhamRareSoc retweeted
So excited to be collaborating with @RareBham @Bham_Childrens on this patient perspectives event with talks about how to handle rare diseases in primary care. Limited tickets. 1st March 2018 #rareaware Sign up here: docs.google.com/…/1FAIpQLSeGbex6YncdBgAkFl…/viewform
BhamRareSoc retweeted
Interested in rare diseases and dermatology?
Come along to the Rare Dermatological Diseases lecture hosted by... fb.me/1rMuIsEgO
BhamRareSoc retweeted
Patients tell us that one of the hardest things about having a #raredisease is often their doctor may not have much information. Visit our webpage to find out how you can find more information and support, and how to know if the information is reliable: ow.ly/CDLA30hdTlY
BhamRareSoc retweeted
Thank you so much to fab Sri & Tom & all med students @RareBham for all ur help today & for being so interested #RareDiseases & holistic compassionate patient care!