Category: Press Releases

Rare Voices Australia (RVA), the national peak not-for-profit organisation advocating for the nearly 2 million Australians living with rare disease, welcomes the Morrison Government’s support of a National Rare Disease Framework. The Hon. Greg Hunt MP, Minister for Health, made the announcement today as part of the official opening of RVA’s biennial 2018 National Rare Disease Summit, which is taking place on 16-17 November 2018 in Melbourne.

The Morrison Government will commission RVA to work with all stakeholders to deliver the National Rare Disease Framework with $154,000 in grant funding. The Minister acknowledged the work of Rare Voices Australia which has “made such a difference… a driving force for change.”

To read RVA’s full response, click here.

RVA is pleased to welcome the Turnbull Government’s announcement that ended the long-standing uncertainty regarding the Review of the Life Saving Drugs Program (LSDP). We commend the Government’s commitment to retain and improve the LSDP, drawing upon the recommendations of the Review. To read the Wilson Review Report, the Government’s response to the Report and FAQ, click here.

Read RVA’s media release here.

As many of you are aware, this has been a long and challenging issue. RVA thanks everyone involved for their persistence and dedication – you’ve all played an integral role in making the future brighter for rare disease patients in Australia!

RVA was in Sydney recently for the announcement of the successful recipients of the recent Medical Research Future Fund (MRFF) round targeting rare cancers and rare diseases. The Government awarded $26m in funding, double the $13m originally announced. This is an important investment into research for a number of rare diseases and cancers including Huntington’s Disease, cystic fibrosis, multiple sclerosis and brain cancer.

The Minister for Health, Greg Hunt, said he wants Australia to be “at the forefront of treating and beating rare diseases and rare cancers.”

To read RVA’s media release, click here.

A photographic exhibition opening in Sydney next week offers a unique perspective on what it’s like to grow up with someone living with a rare disease.

The Forgotten Ones is a series of portraits of young Australians who live with a sibling suffering from a rare disease. As well as raising awareness of the common challenges faced by the 1 million-plus Australians affected by rare diseases, the exhibition acknowledges and celebrates the often forgotten support that siblings provide to loved ones living with a rare condition.

The project was driven by the personal experience of the photographer, Alexandrena Parker, who was born with a life-threatening lung and digestive disease called cystic fibrosis, Alexandrena recognised that while there was always a lot of support for her and her parents, the needs and concerns of her siblings were often overlooked.

Presented by Rare Voices Australia, the exhibition features black and white portraits of children aged between 3 and 19.  Photographed in a cohesive and consistent aesthetic against a black background and/or embodied in water, the images are a poignant body of work that captures both the vulnerability and the strength of the children.

The exhibition will be opened by the NSW Premier, the Hon. Mike Baird, MP.

ABOUT THE PHOTOGRAPHER

Alexandrena Parker is an Australian photographer renowned for capturing raw and honest portraits of children. Alexandrena’s distinctive style of contemporary and beautifully composed images is built into the foundation of her work.

ABOUT RARE VOICES AUSTRALIA

Rare Voices Australia (RVA) is Australia’s national rare disease alliance advocating for those who live with a rare disease. RVA provides a strong common voice to promote health policy and a healthcare system that works for those with rare diseases. RVA works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare diseases in Australia.  RVA is the unified voice of ALL Australians living with a rare disease.

THE EXHIBITION

The series will be exhibited in The Barnett Long Room, Customs House. An opening night on Wednesday 13th May from 6.30pm to 9pm will bring together invited guests, families involved in the project, Rare Voices Australia staff and guests, media and the general public.

Attendance at The Forgotten Ones exhibition is FREE. Donations may be made to Rare Voices Australia.

Following the launch, the exhibition will be open to the general public on Thursday 14th May from 10am to 2pm.

FOR MORE INFORMATION

An interview with Alexandrena offering more insight into “The Forgotten Ones” project can be found here.

More information about rare diseases and the work of Rare Voices Australia can be found on the RVA website.

Rare Voices Australia hosted a Rare Disease Summit on Friday 27th and Saturday 28th March 2015 in Melbourne. A National Rare Disease Plan, Driving Collaboration, Driving Action. The Summit was officially opened by Senator Richard Di Natale.

In Senator Richard Di Natale’s opening address to the Summit he urged Rare Voices Australia to continue their advocacy and he praised Rare Voices Australia for its activities and for hosting the Summit.

“You are ensuring that your voices are heard collectively. That you are meeting with all the key stakeholders in this space, and bringing together all the key groups…and it’s only by doing that, that you will
be able to have an impact in your advocacy,” he said. “In terms of Governments and policy-makers listening, you must be organised, and that’s what you’re doing.”

“It’s a lottery, if you happen to have a disease that’s a national health priority, you’ll find that there are protocols, access to treatment is a lot easier and so on. If you’re one of the hundreds of thousands of
Australians living with a rare disease then you face a constant uphill struggle. “We’ve just got to fix that.”

“We’ve got to make sure rare diseases are recognised as a priority. We’ve got to make sure that people get access to the best available treatment,” according to Senator Di Natale. “We’ve got to fix or improve, what is generally a good system when it comes to providing people with access to new drugs, but we’ve got to improve it and make it easier for people who are diagnosed with one of these rare conditions.”

“It’s no longer acceptable that somebody who is unlucky enough to be born with a rare disease has to fight every step of the way…. to get diagnosed and access to the treatment we know works,” Senator Di Natale said.

Rare Voices Australia Executive Director Megan Fookes says: “The Rare Disease Summit brought together over 120 delegates from across the country as well as representation from New Zealand, Switzerland,
United Kingdom and Singapore. The two day summit allowed participants to join the conversation and bring consolidated input to the dialogue driving A National Plan for Rare Diseases. RVA is encouraged to see
many voices now working together Driving Collaboration and Driving Action. RVA is calling for the Federal Government to adopt a National approach to rare diseases.”

“In Australia there is no rare disease policy and there is no National strategy or plan. How can we ignore our most vulnerable and sick who have simply been born with these rare conditions? RVA has received bipartisan support in Federal Parliament but we are waiting for the Government to endorse and support a National Rare Disease Plan,” Ms Fookes said.

“There is much at stake. We need a rare disease policy from
our Government to help people suffering from rare diseases gain access to co-ordinated care, services and treatments which can extend and improve their quality of life.”

The Summit attendees unanimously agreed that a National Plan for rare disease needs to be adopted by the Australian Government. A draft Communique outlining the key Principles and Objectives for a National
Plan was proposed for endorsement and RVA is receiving formal endorsement from many organisations from around the country asking for Australia to please listen.

“People living with a rare disease need better support and coordination of care. A national co-ordinated approach which provides equitable access to diagnosis, care and quality services in the area of rare
disease is long overdue.”

ENDS

A National Rare Disease Plan, Driving Collaboration, Driving Action, will be opened by Senator Richard Di Natale; one of many Parliamentary Friends of Rare Diseases.

Rare Voices Australia is a National Organisation set up to give a unified voice to those living with rare diseases. Rare Voices Australia Executive Director Megan Fookes says: “The Rare Disease Summit allows participants to join the conversation and bring consolidated input to the dialogue driving A National Plan for Rare Diseases. RVA is encouraged to see many voices now working together Driving Collaboration and Driving Action. RVA is calling for the Federal Government to adopt a National approach to rare diseases”.

“In Australia there is no rare disease policy and there is no National strategy or plan. How can we ignore our most vulnerable and sick who have simply been born with these rare conditions? RVA has received bi-partisan support in Federal Parliament but we are waiting for the Government to endorse and support a National Rare Disease Plan” Ms Fookes said. “There is much at stake. We need a rare disease policy from our Government to help people suffering from rare diseases gain access to co-ordinated care, services and treatments which can extend and improve their quality of life.”

In 2009, the European Commission made a formal recommendation for countries to adopt a National Rare Disease Plan by the end of 2013. The UK Government responded by introducing its National Plan for rare diseases in November 2013. Australia needs a plan.

The Summit is very action focused bringing together key stakeholders and opinion leaders to collaborate on a report to continue to press for a National Rare Disease Plan for Australians . There is an excellent line up of speakers national and international speakers giving varied perspectives on a range of topics concerning rare diseases.

Day 2 will be officially opened by Dr Thomas Lönngren, former Executive Director of the European Medicines Agency, EMA (Jan 01-Dec 10) and who also served with the Swedish Board of Health and Welfare as Director of Operations (1978-93). He will talk about the need to adopt key principles for a co-ordinated approach to managing rare diseases as a key health priority.

“People living with a rare disease deserve the same level of quality care and access to treatments as patients with common conditions,” Ms Fookes said. “People living with a rare disease need better support and coordination of care. A national co-ordinated approach which provides equitable access to diagnosis, care and quality services in the area of rare disease is long overdue.”

ENDS

Rare Voices Australia calls for a National Plan to reduce the suffering of an estimated 2 million Australians

28 February, 2015 marks international Rare Diseases Day, established to raise awareness of people around the globe living with a rare disease. Last year more than 84 countries across the globe participated.

Treatment and government support for rare diseases is often minimal and ad-hoc. It means sufferers and their families often have to, beg for the treatment they need to survive.

Rare Voices Australia is a National Organisation set up to give a voice to those living with rare diseases. Executive Director Megan Fookes says Australia needs a National Rare Diseases Plan because an estimated two million Australians suffering from a rare disease, it’s not that rare at all.

“In Australia there is no rare disease policy and there is no National strategy or plan. How can we ignore our most vulnerable and sick who have simply been born with these rare conditions? We now have bi-partisan support in Federal Parliament but we are waiting for the Government to endorse and support an implementation strategy” Ms Fookes said. “There is much at stake. We need a rare disease policy from our Government to help people suffering from rare diseases gain access to co-ordinated care, services and treatments which can extend and improve their quality of life.”

In 2009, the European Commission made a formal recommendation for countries to adopt a National Rare Disease Plan by the end of 2013. The UK Government responded by introducing its National Plan for rare diseases in November 2013. Australia needs a plan.

Over eighty countries now participate in Rare Disease Day. The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients across the world.

Typically chronic and debilitating, rare diseases have enormous repercussions for the whole family. Living with a rare disease becomes a daily challenge for patients and families. Though they have different names and different symptoms, rare diseases have similar impacts. Australia needs to strategise its response and address many questions that affect the forgotten people of our society;

• How to find a timely diagnosis?
• How to access and administer treatments?
• How to find appropriate expertise?
• How to work with a team of caregivers, such as doctors or physical therapists, and other healthcare professionals and coordinate care between them?
• How to operate special equipment?
• How to identify and access social services?
• How to manage the economic burden of living with a rare disease?
• How to ensure the well-being of the entire family and balance priorities?

Patient organisations become a crucial source of information, experience and resources. Day-by-day, hand-in-hand, we present a united voice to advocate for the treatments, care, resources and services we all need.  “People living with rare diseases deserve the same level of quality care and access to treatments as any other patients,” Ms Fookes said. “People living with a rare disease need greater support for and coordination of care. Some centres of expertise exist but are largely siloed. A national co-ordinated approach will allow for improved diagnosis, care and access to quality services in the area of rare disease.”

END.