In the past year, we have seen the power of people coming together to discuss issues affecting them in sickle cell management through the Amplify Sickle Cell Voices Initiative. This year, for World Sickle Cell Awareness Day, we are brining this initiative face to face. We are bringing people impacted by a chronic Illness to discuss how this impacts their everyday life. We believe in sharing to lower the burden of living with a chronic which might be impacting on our mental health.
We have a panel of speakers sharing how they cope and share ideals to manage these chronic illnesses. The panel will be made up of people living with different conditions, with an emphasis on sickle cell disease. We are looking for sponsors to support this event, a few dollars will go a long away. The sponsorship packages include: $4000 -platinum sponsor where you will feature in our event brochure ( full page), social media advertising with x3 people invited to the event and a chance to speak at the event $3000 - Gold sponsor where you will feature in our event brochure (half a page), social media advertising with x2 people invited to the event. $2000 - silver sponsor where you will feature in our social media advertising with x2 people invited to the event. $1000 - bronze sponsor where social media advertising and x1 person invited to the event.
We are excited to have Hon Maria Vamvakinou MP as the guest of honour and Disun future will be joining us for entertainment. You do not want to miss this.
Event Two for World Sickle Cell Awareness Day 2021 is the virtual event that will have all Australians participate. The format will have presentations from Paediatric Haematologists, Adult Haematologists, lived experiences stories from people affected detailing experiences living with sickle cell disease, but also blood transfusions for some. We will have a presentation from an expert from Australian Red Cross Lifeblood. They will present on Blood Transfusions / Donations in sickle cell. We will also have a presentation from a mental health specialist and a genetic counsellor.
Our Participants Include: Dr Anthea Greenway - Paediatric Haematologist - VIC Prof Catherine Cole - Clinical and Laboratory Haematologist - WA Dr Pasquale Barbaro - Paediatric Haematologist - QLD Dr Zane Kaplan - Adult Haematologist - VIC Ms. Claire Dowsing - Haematologist Nurse - VIC Ms. Carolyn Cameron - Genetic Counsellor - VIC Ms. Melody Magengezha - Mental Health Specialist - VIC Ms. Dillys Chi - Caregiver NSW Mr Shane Rao -ASCA Member - QLD Dr Margaret Evans - Galea AM -ASCA Chairperson - VIC Ms. Nathalie Kapuya - ASCA Board Secretary - VIC Ms. Agnes Nsofwa - ASCA Founder / Executive Director - VIC
Register to join us for this event. After registering, you will receive a confirmation email containing information about joining the meeting.
We are excited to announce our keynote speakers for the first ever Sickle Cell Conference in Australia, brought to you by Australian Sickle Cell Advocacy (ASCA) with the theme: "Breaking the Barriers- A New Horizon" with a Mental Health Aspect.
This is in conjunction with Blood 2021Meeting, and we are excited to announce that this conference will now be held virtually from the 17th-18th of September, so you can join from anywhere in the world.
Our Keynote speakers are:
Dr Anthea Greenway - Paediatric Haematologist - The Royal Children's Hospital VIC
Prof Joy Ho AM - Director of Research Royal Prince Alfred Hospital - NSW
Prof Wally Smith - Professor of Medicine - Virginia Commonwealth University - USA
Prof Baba Inusa - Paediatric Haematologist - Guy's and St Thomas NHS Foundation - UK
Lookout for a full list of all our esteemed speakers coming soon.
For those people who might not know, BMS is the original manufacturer of Hydroxyurea, the first drug discovered in 1998 to manage sickle cell disease (SCD) after almost 80 years since SCD was discovered in an American Lab. Before this there was no other drug available to manage SCD specifically.
It took another another 20 plus years to have about 3 new drugs used to manage sickle cell, most of which are still have to be used in combination with Hydroxyurea. We are looking forward to meeting with Mr MacGregor soon so that we can discuss in detail issues affecting the sickle cell community. Thank you Mr MacGregor.
On the 17th of May, ASCA founder Agnes attended the BioPharmaDispatch Conference in Sydney to connect with Industry, Pharma, Policy-makers and other patient groups.
Many important discussions were held with patient groups and gaining access to government discussions regarding access to medications. There were a lot of insights on the process with PBAC approval periods which on average takes about 820 days. Australia does not fair well compared to other developed countries.
Neonatal screening and its gap was also discussed. Like most diseases spoken about at this conference, Sickle Cell Disease does not have a neonatal screening in Australia. ASCA's campaign to ensure that every child in Australia is screened at birth for Sickle Cell Disease was discussed. This will enhance follow-up programs and give those children a good quality of life. ASCA was very inspired by the discussions surrounding Covid-19 vaccinations, the process, the timelines and by the presentation from Anne Harris and Liz Chatwin. We were moved by different patient lived experiences and glad to connect with these fabulous people.
Above ASCA CEO, Agnes Nsofwa, with Paul Cross, the organiser of the BioPharmaDispatch conference in Sydney, Australia. The annual event of BioPharmaDispatch is a platform for the biopharmaceutical industry, its leaders, patient groups and key decision-makers to discuss issues impacting access to the latest healthcare technologies. Thank you Paul for the invitation.
We are so excited to announce that ADAKVEO® (crizanlizumab-tmca) has been approved for use in Australia for treatment of sickle cell disease. As per announcement on the TGA's website on 21st April 2021, Adakveo had been added on the Australian Register of Therapeutic Goods (ARTG). This is major news for people affected by sickle cell disease who for all these years have relied on Hydroxyurea only. See the indications / more about ADAKVEO® (crizanlizumab-tmca) here. See the TGA approval information here.
On the 1st of May, members of our ASCA family had an afternoon get together. We thank everyone who made it and hope you all had an enjoyable afternoon!
The Sickle Cell community still want to be heard! This time with 51+ participants from more than 20 Countries. This season will have a Patient/Caregiver Centered Approach. This time we are learning each other's state of sickle cell disease in participating countries. Each participant will contribute to the topic every session through breakout rooms. We are part of the solution so let's find out how we can fix issues in the sickle cell community. The format is such that we have 12 Project Manager who will each host a session in their country virtually and the group plus, other participants around the world will support them. We have a regular Haematologist / Oncologist who will present most topics from an expert point of view, Dr Rob Sokolic will be very helpful during this season.
Help Linear Clinical Researchtest potential new treatments for Sickle Cell Anaemia! Linear is running a trial to help fight this life-long condition and you could help.
Linear is looking for healthy volunteers who live in Perth, Western Australia to take part in their study, all participants are remunerated for their time and contribution.
Click the link below to find out how we can beat Sickle Cell Anaemia together!
Want to give life with your mates? We’ve registered with Lifeblood Teams — the group blood donation program fromAustralian Red Cross Lifeblood — so let’s enjoy a little healthy competition and make a genuine difference together.
We’d love you to join our team, Australian Sickle Cell Advocacy at https://don8blood.com/32Qiojv. Every donation you make with our team or by yourself counts! Together, as a team, we can work towards contributing to the 31,000 donations that Australia still needs every week.
To participate, you can:
1) Book a donation
2) JoinASCA Lifeblood team
3) Recruit new Team Members- Invite your friends & family to help save lives.
This course has been developed to provide an understanding of sickle cell disease, recognising its symptoms, supporting and educating the patient, and management of the disease.
The course was prepared with input from The Haematologists on the ASCA Board, The Nurse Educator from RMIT also part of ASCA, Patients and Caregivers in ASCA.
We continue to remind people to get tested to know their sickle cell status.
This test is free if you are an Australian Permanent Resident or Citizen. Please do your part to be informed about our next generation.
*Don't be caught off or don't let our children be caught off.*
You can only know your sickle cell status if you get tested.
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