Blue Wren Advocacy & Consulting

04/11/2024

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18/10/2024

✍️ Survey on expertise, centers & networks for rare disease

Rare Diseases International (RDI) is launching a survey to map rare disease expertise, care-providing centers and networks across various countries. The survey aims to identify available expertise, and understand its organisation, whether through hospitals, centers, or specialised departments, along with their characteristics.

The anonymous survey takes less than 5 minutes, and is available in English and Spanish. Survey link: https://bit.ly/3Bv8gDC

RDI is the global alliance of people living with a rare disease of all nationalities across all rare diseases.🌏 RDI’s mission is to be a strong common voice on behalf of rare disease patients around the world, to advocate for rare diseases as an international public health priority and to represent its members and enhance their capacities.

18/10/2024

The National Blood Authority (NBA) aims to develop a framework that will guide decision making in relation to the supply of immunoglobulin (Ig) to people in circumstances where there may be a significant interruption to supply.

As part of this work, NBA has engaged HealthConsult to invite healthcare consumers, community members, carers, and those with lived experience of a condition requiring IvIg or ScIg treatment to participate in an upcoming online engagement exercise. This will comprise some individual reflection on an online platform and two online live workshops. Findings will help ensure that Ig is distributed in a fair and ethical manner during times of short supply.

𝐖𝐨𝐫𝐤𝐬𝐡𝐨𝐩 𝐃𝐞𝐭𝐚𝐢𝐥𝐬:
Format: Online (individual tasks and live workshops)
📅Dates:
Tuesday, October 29th, 12pm-1pm AEST
Friday, November 8th, 12pm-1pm AEST
🔗Registration Link: https://forms.office.com/r/FfKHXFpVc2

For any questions you may have or more information, contact HealthConsult at kahlia.green@healthconsult.com.au

14/10/2024

Rare Voices Australia and The Kids Research Institute (formerly Telethon Kids Institute) are interested in finding out what you think are the 🤔𝐓𝐨𝐩 𝟏𝟎 𝐌𝐨𝐬𝐭 𝐈𝐦𝐩𝐨𝐫𝐭𝐚𝐧𝐭 𝐔𝐧𝐚𝐧𝐬𝐰𝐞𝐫𝐞𝐝 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐐𝐮𝐞𝐬𝐭𝐢𝐨𝐧𝐬 𝐟𝐨𝐫 𝐭𝐡𝐞 𝐅𝐮𝐭𝐮𝐫𝐞 𝐨𝐟 𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐢𝐧 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚. These findings will inform a public report that will be used to guide advocacy for rare disease research in Australia.

This 5-10 minute anonymous online survey asks you about your most important research questions or concerns about rare disease.

✍️ Learn more and complete the survey: https://uwa.qualtrics.com/jfe/form/SV_6huE7vfxH3rqgdM

24/09/2024

Well done Rare Voices Australia!

Following the recommendations of a report led by Monash University’s Dr Jane Tiller and Professor Paul Lacaze, the Australian Government has today announced that it will legislate to completely ban the use of genetic test results in life insurance underwriting. Consistent with the recommendations,...

31/08/2024

There is only 1 week left to provide feedback as part of the review of Australia’s Disability Strategy 2021-2031.

People with disability, their families and carers, disability organisations and the wider community are invited to provide feedback.

We would like to know what parts of the Strategy you think are working and what needs to change to improve outcomes for people with disability.

Feedback can be provided in different ways, you can:
• Answer questions via a form
• Send an email or a video
• Call and speak to someone

Have your say by 6 September by visiting https://engage.dss.gov.au/ads-review/

26/06/2024

🌟 Calling all young creatives! 🎨✏️

You're invited to take part in a drawing competition to mark a special upcoming construction milestone – our new hospital building reaching full height!

Leave a legacy for our future patients by sharing a creative drawing and a few words in response to this question: "What makes you feel strong if you're unwell?"

Entrants go in the draw to win one of five $100 gift cards valid at a range of kids’ retail stores like Smiggle, Dymocks, Rebel Sport and more.

The drawings and messages will be displayed in celebration of this construction milestone.

💌 Download the drawing sheet here:
https://www.schn.health.nsw.gov.au/sites/default/files/2024-06/CHW-top-out-drawing-comp.pdf

Entries close Friday 5 July 2024.

26/06/2024

Need information on mental health support in another language? Whatever your situation, you’re not alone.

Whether you’re seeking support in language or a translator, Head to Health can help you find suitable digital mental health services and support.

For more information visit 💻 https://www.headtohealth.gov.au/living-well/support-people-different-cultural-backgrounds

26/06/2024

20/05/2024

20/05/2024

A comprehensive disability reform agenda is underway across Commonwealth and State Governments. ✍️ On Tuesday 16 April, Rare Voices Australia (RVA) convened a virtual roundtable to explore two important areas of proposed changes to the National Disability Insurance Scheme (NDIS): Draft Legislation – NDIS Amendment Bill 2024 and the NDIS Provider and Worker Registration Taskforce. RVA was delighted to have 15 RVA Partner groups/organisations (rare disease groups/organisations) join in on a productive and engaging session, focused on examining the systemic issues experienced by NDIS participants living with a rare disease, and proposing solutions to improve both outcomes and experiences.

📜 More information about the virtual roundtable and the newly created NDIS Neurodegenerative Disorders and Palliative Care Working Group (N&PWG) is available via the April 2024 Disability Advocacy Update on RVA’s website: https://rarevoices.org.au/april-2024-disability-advocacy-update/

20/05/2024

The Rare Awareness Rare Education (RARE) Portal is now over a year old!🎊 Thank you to everyone who has contributed to Rare Voices Australia’s (RVA) multi-stakeholder consultation process to date.

📚The “provision of an accessible multi-purpose digital repository of information and resources for rare diseases, including available care and support services” is a key deliverable of the Australian Government’s National Strategic Action Plan for Rare Diseases. Initial development of the RARE Portal was funded by the Australian Government and over 15,000 people have visited the RARE Portal to date.

We encourage you to visit the RARE Portal: rareportal.org.au

07/05/2024

It's okay. Awful times will come. You don't have to do it alone.

07/05/2024

🩺Dive deep into the world of Secondary Immunodeficiencies with us!

📅Mark your calendars for May 17th at 15:00 CEST! 🕒

Don't miss our exhilarating IPOPI Hard Talks session, where we unravel the mysteries of haematological and immunological insights! 🧬💉

Join the captivating dialogue with the brilliant minds of Dr. Nizar Mahlaoui and Dr. Elena Cabezudo!

👨‍⚕️Tailored for healthcare professionals and visionary patient group leaders, this series promises more than just discussions – it's an immersive experience!

Engage in interactive discussions 💬🗨️, spark lively debates, and elevate your understanding of PID diagnosis and clinical care to unprecedented heights!

🔗 Secure your spot now at https://ipopi.org/hard-talks-sids/

07/05/2024

🌻✈️ Hidden Disability Sunflower - Now in Airports! 🌻✈️

More than 240 airports globally now offer free sunflower lanyards and wristbands. You can contact your local airport at least 10 days before departure, as they may post the items out to you.

Australian airports that are now incorporating the sunflower lanyard scheme: Adelaide, Albury, Brisbane, Cairns, Gold Coast, Hobart, Melbourne, Perth, Shellharbour, Sydney.

Since being launched in 2016, the Hidden Disabilities Sunflower scheme has helped people with hidden disability navigate public spaces, with extra support being given by workers who recognise the symbol. The sunflower is ideal for such a scheme, as sunflowers often represent strength, growth and confidence.

You can also purchase Sunflower merchandise here:
https://hdsunflower.com/au/shop.html

07/05/2024

For those with primary and secondary immune deficiencies

💬 Member Meet-Up | Tasmania

IDFA is set to host a casual member meet-up for our members in Tasmania, ‘Conversations with IDFA’.

The event will be held in Launceston on June 1st, and includes members, health professional members and experts. Although the event is being held in Tasmania, members from all across Australia are invited to the event.

We will welcome our guest immunologist Paul Cameron who will give guests an overview of his work and answer any questions you may have. The intimate setting will enable casual conversation between guests and experts, allowing for a space to connect and learn from other members.

This event provides a chance to discuss opportunities to build lasting connections through IDFA Coffee Club or other in-person and online activities.

📅 Date: Saturday, 1 June 2024
⏰ Time: 12.00pm - 3.00pm
📍 Location: Alida Restaurant at Penny Royal – Launceston TAS

RSVP now to secure a spot! Upon RSVP, members will be provided with menu options to pre-select their food and drinks for the day.

https://www.idfa.org.au/event/tas-member-meet-up/

29/04/2024

World PI Week raises awareness of Primary Immunodeficiencies globally. Thank you to my friends Kieran and Sheree and many others for donating plasma, which gives me and other PI patients treatment for a better quality of life!