Top Tweets for #FairForRare
BREAKING - We were thrilled to join @StephenJonesMP and Dr Jane Tiller this morning for the banning of life insurers from using genetic tests to deny cover or hike premiums on cancer patients💪 #fairforrare
Have you had a chance to do this yet ? If not you can still contact your local MLA’s to get them on board with helping to establish Rare Disease All Party Group (APG) at the NI Assembly.
#RareDiseaseNI #FairForRare
#IWD2020 | Our patients are our Why. People like Anita inspire our work every day and push us to make it #FairForRare. #RaisingTheTide
Chief Executive of Rare Disorders New Zealand Lisa Foster at Parliament launching their #FairforRare campaign. Calling for a national framework for rare disorders in New Zealand.
@RareDisordersNZ #RareDiseaseDay
Rare Disease Day is an annual event for the Victorian Support Sector and will be held from 9.30am – 4.30pm at the Royal Children’s Hospital in Parkville
RSVP here: https://t.co/7OFIrv6cwm
#RareDiseaseDay #fairforrare #knowyourgene #ShareYourStripes
A big thank you once again to everyone who came along to our Parliamentary Event yesterday! Here are some more photos from the event. #raredisease #rarevoicesaustralia #health #rarediseases #fairforrare
13 to 19 October is HPN Awareness Week. RVA Partner, Parenteral Nutrition Down Under (PNDU), is providing informative resources, interactive games & this video to mark the week: https://t.co/m7D4NsgqHM #hpnawarenessweek #raredisease #fairforrare #rarediseases
A reminder for us all as we head into the weekend #raredisease #health #rarediseases #selfcare #mentalhealth #rarediseases #fairforrare #rarevoicesaustralia
"When my kids were alive I promised them that I'd fix it. I couldn't fix it for them, but I'm damn sure I can fix it for everyone else." - @smaaustralia CEO Julie Cini
More: https://t.co/QXvA6sherv #RareDisease #spinalmuscularatrophy #rarediseases #fairforrare #health
An informative piece published in
@ConversationEDU about population #DNAtesting for disease risk, co-authored by Dr @PaulLacaze who is a member of RVA's Scientific & Advisory Committee: https://t.co/HQUGXbMns1 #raredisease #rarevoicesaustralia #fairforrare
A mid-week reminder for us all #raredisease #rarevoicesaustralia #rarediseases #fairforrare #rare #health
For anyone having a tough week so far #raredisease #rarevoicesaustralia #fairforrare #rarediseases #rare #health
#RareDiseaseDay has arrived in the Southern Hemisphere. #ShareYourRare on this special day. #AcuteNecrotizingEncephalopathy #AussieANE #KiwiANE #SouthAfricaANE #FairforRare @RareVoices @NZ_ORD @RarediseasesSA
What do young people want? Carolyn Thompson @CHFofAustralia explains what is important for our youth. Thanks to the panelist @GidonGoodman, Sean Millis & Anna Kirkman @RareVoices #NationalRareDiseaseSummit #FairForRare #RareDiseases
@Asher_Wolf @VictorianGreens @vic_socialists @LiberalVictoria @VictorianLabor Hey Asher have a great interest in #FairForRare - many of the issues are about federal funding - what can we do at a state level? Are there examples of other rare conditions that get state attention?
Nicole Millis, CEO @RareVoices “there is a lack of data, variation and uncertainty with rare diseases, time is a factor and treatment and management plans are not always equitable” #NationalRareDiseaseSummit #FairForRare #RareDiseases #swanaus
Nicole Millis @RareVoices - why advocate for rare diseases: change and reform needed, no other choice, can work and can make a difference #NationalRareDiseaseSummit #FairForRare #RareDisease #swanaus
Pleased to be attending and speaking at @RareVoices National Rare Disease Summit today
#raredisease #fairforrare #RVA #RareDiseaseSummit
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