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As per our annual calendar, we are pleased to announce that our first-ever men's mental health forum will be held on 4th August 2021 via zoom at 8pm AEST. The panel of speakers include people living with SCD, caregivers, mental health experts, prominent men in our community and an actor, a rare disease advocate.  Scholars have indicated that there is a silent crisis in men’s mental health. Australian Sickle Cell Advocacy Inc is encouraging people impacted by sickle cell disease and their families to be able to discuss health freely. Going forward we will be having routine men's and women's health forums. This is part one of three sessions of the Men's Heath Chats. Join us next months for part two. Register here to join us: 

ASCA welcomes the news that our application for Newborn Screening (NBS) of Sickle Cell Disease (SCD) has progressed to full review. As of the 8th of June 2021, the Australian Government Department of Health has officially updated that sickle cell disease has become one of the 7 nominated conditions proposed for inclusion in the Newborn Bloodspot Screening program.

 Our efforts to promote NBS for SCD started in 2018 when ASCA highlighted this gap in our healthcare system. In November 2020 we sent through a formal application to the Department of Health. Our efforts for this program started with our social media platforms campaign for World Sickle Cell Awareness Day 2021 and will continue for the rest of the year. We would like to thank our Board Members for the direction, executive members, general members and all our volunteers for their input. We would also like to thank all Rare Disease Organisations who helped us with the application. 

While this is the first step, ASCA would like to see that this program is fully implemented in all States and that government should consider streamlining the process. The idea of having a disease go through the whole recommendation process with no guarantee whether it will either be funded or implemented in different States is something that the government should consider reviewing.

Subsequently, we are received an update from Hon Greg Hunt MP clarifying to us the process of having the Newborn Screening for Sickle Cell Disease implemented in Australia. You can read the letter here.  


       
 

A World Sickle Cell Awareness Day Message from our Official Organisation Ambassador Hon Peter Khalil.
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 held a virtual event for our community in place of our originally planned Family Dinner due to COVID reasons. In a positive light, due to it being a virtual event, we were able be in the company of our members from all over Australia, including our Western Australia and Queensland charters.

We heard from a members who shared their experience with Sickle Cell Disease, enjoyed lively entertainment from Disunn future and learnt more about mental health and coping strategies. 

We would like to thank our panel of speakers for sharing how they cope and manage these chronic illnesses. 

We also thank Hon Maria Vamvakinou MP as the guest of honour and Disun future for providing us beautiful music with the important message of staying strong. We would like to also thank Hon Peter Khalil who was unable to attend the events but was able to provide us with a video to mark the occasion.  

Thank you to everyone who joined us, we hope you had a lovely evening.
Link to the ASCA World Sickle Cell Day Virtual Dinner
Link to the ASCA Education Day 11th June 2021
Our "Shine the Light" campaign for World Sickle Cell Awareness Day also occurred on June the 19th. We partnered with multiple landmarks throughout Australia to shine RED in support of Sickle Cell Disease. We would like to thank all these partners for supporting people impacted by Sickle Cell Disease in Australia.
On the 23rd of June, ASCA attended "The Room for a Patient View" Conference organised by Medicines Australia. We were privileged to have ASCA CEO Agnes Nsofwa Sickle Cell Talks With Agnes invited to be part of the organising committee for this event.
 
For the last two months, Agnes has been helping organise the format, the program and which guests to invite. Agnes attended the event with Isabella Agius the President of Australian Sickle cell Advocacy Inc Queensland Chapter.

This event was very informative highlighting important issues needed for patient involvement in managing different health conditions. Important topics like access to medicines, clinical trials, issues with repurposed medications for example like the case of hydroxyurea and so on. The House of Representative Committee inquiry into new drugs and novel medical technologies was also extensively discussed. This inquiry has been mostly about the access to treatment of rare diseases and conditions where there is a high and unmet clinical need.

The event was officiated by Federal Minister of Health Hon Greg Hunt MP and Shadow Minister for Health and Ageing Hon Mark Butler MP.  Tracey Spicer AM was the masters of ceremonies interviewing various patients and clinicians to highlight the issues of patients and the healthcare system. The evening also  featured Dr Mike Freelander MP and Medicines Australia CEO Elizabeth de Somer. The event made it possible for us to interact with different patient advocates and pharmaceutical representatives all supporting this important cause.

We would like to thank Medicines Australia for inviting us to participate in this whole process. For the full report about this event see it here. The video for the event can be seen here.
We are excited to announce that the guest of honour for the Inaugural Australian sickle cell conference will be Hon Mark Butler MP Shadow Minister for Health and Ageing 
We are excited to announce our keynote speakers for the conference 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 event has been sponsored by Novartis as our main sponsor and Sanofi as our Gold sponsors. This is brought to you in conjunction with Blood 2021 Meeting. However, due to Covid-19, the conference will now be held virtually from the 17th-18th of September, so you can join from anywhere in the world. 

Our Keynote speaker 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
  • We are still in the process of updating our speakers page so please keep reviewing our website for more updates

We hope that you will join us on this first for Australia event.
-  We are fundraising for this event, donate to here to help our work.

This conference will be held on the Whova App virtual platform. Registration is now open. Follow the link below to take you to our website. We look forward to you joining us.

Purchase Tickets for the conference here - The first 100 get a 20% discount. See fine prints on the site:
- See our conference website here http://ascaconf.org/conference-tickets/
- Direct link to purchases the tickets is here: https://whova.com/portal/registration/ascav_202106

We are grateful to be supported by Rare Voices Australia  Syndromes Without A Name (SWAN) Australia  Genetic Support Network of Victoria and Centre for Community- Driven Research
Volunteer with us for the conference

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.

Take the ASCA Sickle Cell Disease Course Here

We'd love to hear your thoughts on the e-news. Please send any comments or feedback to our: 

 EMAIL at  info@aussicklecelladvocacy.org
 WEBSITE
https://aussicklecelladvocacy.org

We are based in :
 Melbourne Australia
 +61 1300 148 824

Copyright © 2017 Australian Sickle Cell Advocacy Inc.  All rights reserved. 

 

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