Top Tweets for #SWANAus
During Patient Experience Week, we acknowledge how tough hospital can be for families! If you need support while your child is in hospital, please email Heather ([email protected]) or Ant ([email protected]).
#PatientExperienceWeek #Hospital #SWANAus
Parents and carers are often the voice of our children in healthcare settings. During Patient Experience Week, please see our Advocacy Toolkit which has tips on advocating for children in hospital and medical appointments: https://t.co/CBz9jWs9Wj
#PatientExperienceWeek #SWANAus
We are thinking of SWAN siblings on this special day! If your child (sibling of your SWAN child) would like to join our Siblings group, please email Ant at [email protected]
#Siblings #SiblingLove #SWANAus
Happy Easter to our members and supporters who celebrate today and happy school holidays to all our families!
#Easter #Chocolate #TreatYourself #SWANAus #SchoolHolidays
The theme for World Health Day 2023 is "Health for All: strengthening primary health care to build resilient systems." At SWAN, we believe a strong public system leaves no-one behind.
What does this year's theme mean to you?
#WorldHealthDay #Equity #PublicHealth #SWANAus
On Sat 27 May, Ben is doing 10 hours of pull ups, sit ups and running...all for SWAN! You can support Ben's 10 Hour Challenge and SWAN families by donating via this link: https://t.co/QvdVKYTbvm
#Bens10HourChallenge #SWANAus #support #information #Fitness #Fundraising
Today is Purple Day or Epilepsy Awareness Day. The day is a global initiative dedicated to raising epilepsy awareness. Many of our #SWANaus children have rare epilepsy, and some of our SWAN families struggle to control their child's seizures.
Over 150 SWAN children experience neurological symptoms as a result of their genetic condition. Some conditions include: Rubinstein-Taybi Syndrome, FOXP1 Syndrome, SCN2A, CACNA1A and a range of rare deletions and duplications.
#brainawarenessweek #neurological #SWANAus
Rare diseases affect 5% of the population. Does this statistic surprise you? At SWAN, we're committed to promoting research to give rare diseases the attention they deserve: https://t.co/idPg3cmmam
@rarediseaseday #RDD2023 #Genetics #PeerSupport #SWANAus
Before and after receiving a diagnosis, our families juggle competing medical priorities and a number of associated emotions. Dalal (SWAN mum) talks about the importance of celebrating her daughter and the small wins.
@rarediseaseday #RDD2023 #Genetics #PeerSupport #SWANAus
There are nearly 7000 known rare diseases. Our members have a range of conditions, but sometimes there is crossover. Families often join SWAN with the hope that they find other families with the same condition.
@rarediseaseday #RDD2023 #Genetics #PeerSupport #SWANAus
Having a child with a rare genetic condition is a steep learning curve. Health professionals can assist our families by using patient friendly language, particularly post-diagnosis.
#RareDiseaseDay #RDD2023 #Genetics #Genomics #Medical #PeerSupport #SWANAus
There are 300 million people worldwide living with a rare disease.
Having a child with a rare condition can be isolating. But rare is many. Help SWAN families feel less alone by raising awareness of Rare Disease Day.
#RareDiseaseDay #RDD2023 #Genetics #PeerSupport #SWANAus
Today is World Cancer Day. During the month of rare disease day, we draw your attention to the estimated 200 rare cancers. Some SWAN children develop tumours as a result of their rare genetic condition.
#WorldCancerDay #RareDiseaseDay #RDD2023 #Genetics #PeerSupport #SWANAus
Many SWAN members experience mixed emotions when their child is diagnosed with a rare genetic condition. One of our SWAN members describes this as a rollercoaster of anxiety and relief.
#RareDiseaseDay #RDD2023 #Genetics #Genomics #Diagnosis #PeerSupport #SWANAus
Happy International Day of Education! Here are two resources about the rights of students with disability and collaborating with educators.
Your rights as a student: https://t.co/FewtI76PwZ
Conversations for collaboration: https://t.co/dj22CW4K5i
#education #learning #SWANAus
Reason #8
Our SWAN bags have two funky sides!
Shop on our website: https://t.co/DtJsqiHQ9Z
Or donate: https://t.co/G4orzHpIbH
#festiveseason #christmas #merchandise #tshirt #bag #SWANAus #peersupport
Reason #7
You can rock the SWAN T-shirt at SWAN events, or out with friends!
Shop on our website: https://t.co/DtJsqiHQ9Z
Or donate: https://t.co/G4orzHpIbH
#festiveseason #christmas #merchandise #tshirt #bag #SWANAus #peersupport
Reason #6
Shopping for our merch online is a piece of cake, you won't even have to go to the shops!
Shop our merch: https://t.co/DtJsqiHQ9Z
Or donate: https://t.co/G4orzHpIbH
#festiveseason #christmas #merchandise #tshirt #bag #SWANAus #peersupport
Today we celebrate the wonderful children with disability who make up SWAN! This #IDPD, have your say about the NDIS to improve access for our kids: https://t.co/q7HsaRVAJ5
SWAN's submission on Capacity & Culture of the NDIA: https://t.co/c7hBlG5MDH
#disability #NDIS #SWANAus
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