United Nations General Assembly Resolution on Persons Living with a Rare Disease and their Families

The global community of persons living with a rare disease, their families, and civil society organisations, with the support of UN member states, are calling for the adoption of the upcoming United Nations General Assembly (UNGA) Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families” (Resolution on PLWRD). This campaign is being led at a global level by the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS – Rare Diseases Europe.

Brief summary

  • The UNGA Resolution on PLWRD will be presented through the Third Committee, which commences in September 2021. Learn more about the UNGA Resolution process here.
  • As one of the 193 nation-states of the UN, Australia will have the opportunity to support the adoption of the UNGA Resolution on PLWRD.

Significance of a UNGA Resolution

A UNGA Resolution would bring visibility to PLWRD within the UN system as much as in its member states at a national level. It would act as a catalyst for actions and policies, both at the global and national level in countries around the world.

Key asks of the Resolution on PWLRD

The UNGA Resolution on PLWRD is made up of five key asks that are consistent with a range of existing initiatives, policies and declarations across different areas including:

  • Protection of human rights
  • Fight against stigma, discrimination, exclusion, and marginalisation
  • Disability
  • Vulnerability
  • Rights of children and rights of women
  • Universal Health Coverage
  • Agenda 2030, Sustainable Development Goals, the commitment to “Leave no one behind”
  • Social inclusion

Five key asks

  1. Human rights and inclusion: participation and inclusion of persons living with a rare disease and their families in society and respect of their human rights

  2. Appropriate care: improvement of health and social outcomes with the appropriate care and support within existing resources

  3. National strategies: promotion of national strategies and measures to leave no one behind

  4. Recognition in the UN system: integration and visibility of the rare diseases issue into UN agencies and programmes

  5. Monitor progress and implementation: regular reports by the UN Secretariat to monitor the implementation and progress on the status of PLWRD

Read about these key asks in more detail here.

Rare Voices Australia’s (RVA) advocacy for a UNGA Resolution on PWLRD

RVA has written a formal letter to the Hon Greg Hunt MP’s office to inform the Minister’s office about the upcoming UNGA Resolution on PWLDR. We have requested that Australia endorse the UNGA Resolution on PLWRD, in alignment with the Australian Government’s demonstrated commitment to rare diseases.

Additionally, RVA will be disseminating information in our monthly e-newsletter and across our social media channels to help spread the word about the UNGA Resolution on PWLDR.

How you can help

We welcome all stakeholders in the rare disease sector to help amplify this message by sharing RVA’s posts on social media and this article with your network.

You can also access this toolkit and download a range of assets to use in your advocacy.

Next steps

The aim is to the get the UNGA Resolution on PWLDR adopted by the 193 member states of the UN at the General Assembly in their session which commences in September 2021. The hope is that the adoption of this UN Resolution is achieved by October or November 2021.

MRFF Rare Cancers Rare Diseases Unmet Need grant open

A new Medical Research Future Fund (MRFF) Rare Cancers Rare Diseases Unmet Need grant has opened.

Applications to this grant opportunity must propose research that addresses one of the seven Streams of research outlined in the grant. Click through for more information. 

The close date and time is 18 August 2021 at 5pm (ACT local time).

Click here for more information.

Federal Budget 2021-22 and Australians living with a rare disease

On Tuesday 11 May 2021, Treasurer Josh Frydenberg announced the Morrison Government’s 2021-22 Federal Budget. 

As the peak body for Australians living with a rare disease, Rare Voices Australia (RVA) attended the Department of Health’s Portfolio Briefing webinar presentation and Q&A with the Hon Greg Hunt MP (Minister for Health and Aged Care); Senator the Hon Richard Colbeck (Minister for Senior Australians and Aged Care Services); the Hon Mark Coulton MP (Minister for Regional Health, Regional Communications and Local Government); and the Hon David Coleman MP (Assistant Minister to the Prime Minister for Mental Health and Suicide Prevention). The session was facilitated by Dr Brendan Murphy, Secretary of the Department of Health.

Click here to read RVA’s full statement.

Article Published in Journal of Paediatrics and Child Health

Rare Voices Australia (RVA) Scientific and Medical Advisory Committee members, Kaustuv Bhattacharya, Yvonne Zurynski and Adam Jaffe, have written an article for the Journal of Paediatrics and Child Health, alongside RVA’s CEO, Nicole Millis.

The article is titled, Rare diseases research and policy in Australia: On the journey to equitable care. Click here to download the article or here to access the online link.

Compulsory NDIS Assessments Placed on Pause

Senator the Hon. Linda Reynolds CSC, Minister for the National Disability Insurance Scheme (NDIS), has placed compulsory NDIS assessments on pause.

Rare Voices Australia (RVA) welcomes this initial move and will continue monitoring this situation. 

As stated in our Submission to the Joint Standing Committee on the NDIS Parliamentary Inquiry into Independent Assessments, RVA does not support the use of independent assessments for rare disease candidates. Based on the lived experiences of families impacted by rare diseases, RVA believes that independent assessments will further embed the inequity and inconsistency that many people living with a rare disease and their families have encountered in previous dealings with the NDIS.

Read RVA’s Submission to the Parliamentary Inquiry.

Read RVA’s Submission to the National Disability Insurance Agency’s public consultation: access and eligibility policy with independent assessments.

Survey: Inform WA Health Department About Support Required by Rare Disease Community Groups

In Western Australia, hundreds of peer support groups and other Non Governmental Organisations (NGOs) provide crucial support for those living with rare, genetic, and undiagnosed conditions. During the COVID-19 pandemic, this cohort/sector has been recognised by the State Government as being amongst the most vulnerable in the community. 

As such, the WA Department of Health (Office of Population Health Genomics) has engaged ConnectGroups to develop a 25-30 minute online survey. Click here to view the flyer.

Who is eligible to complete the survey?

Leaders of any peer support group or NGO that supports Western Australians living with a rare, genetic or undiagnosed condition. 

WA Department of Health’s goal in commissioning this survey:

To foster the long-term sustainability of these groups by identifying and addressing current gaps in service delivery.

Who is conducting the survey:

ConnectGroups is the peak body for peer support in WA, and is the voice of over 690 groups across the state for mental health, chronic and genetic conditions, social isolation and other life adversities. Click here to learn more about ConnectGroups.

ConnectGroups is looking to hear directly from rare disease NGOs and peer support groups who have members in WA and can provide valuable insights into the ongoing training, funding and support that is needed in this sector. To achieve the intended outcomes, we invite leaders to complete this 25-30 minute survey by 23 March 2021.

The survey covers the following areas:  

1.       How your support group/organisation operates.  

2.       What services your support group/organisation provides.  

3.       What assistance your support group/organisation requires to continue to deliver these services. 

All questions require a response for the survey to be submitted. ConnectGroups encourages respondents to make use of the ‘N/A’, ‘I don’t know’, and ‘Other’ options if they are unable to respond. For questions that require a number to be entered, please enter ‘000’ if you do not want to respond.  

ConnectGroups would like to thank you for participating in this sector consultation. Your response will be highly valuable in providing a clear and complete image of the NGO sector in WA and of the way forward.  

Take the survey here.

If you have any questions about the survey or if you’d like to undertake a phone survey, contact ConnectGroups by phone: 08 9364 6909.

Dr Jim McGill receives 2021 Australia Day Honours

Rare Voices Australia (RVA) congratulates Dr Jim McGill on his 2021 Australia Day Honour for significant service to metabolic medicine, to biochemical genetic pathology, and to medical education.

Dr McGill is a longtime champion of rare diseases. He is a world leading expert in a range of metabolic conditions and is a leader in providing person-centred care. Additionally, he has a long history of providing excellent clinical care and compassion to Australians living with a rare disease and their families. Dr McGill’s dedication, generosity, and commitment to providing Australians living with a rare disease with a better quality of life, expert medical care, high quality research and support, is exceptional.

Over the course of his career, Dr McGill has participated in countless rare disease-related committees, conferences and has held numerous leadership roles. He has changed the lives of a countless number of Australian children as a passionate advocate for newborn screening. His work continues to ensure that Australia is a world leader in newborn screening in terms of uptake, quality, number of conditions diagnosed and safety. 

Now retired from clinical practice, Dr McGill will be missed by his patients around Australia. RVA thanks Dr McGill for all of his work in the rare disease sector and for his immeasurable contribution!

WA Department of Health Stakeholder Consultation Focus Groups

The Western Australia Department of Health, Office of Population Health Genomics (OPHG) is currently reviewing the supports, services and systems available to West Australians living with rare, genetic and undiagnosed conditions and their families, and how the community navigates these systems. If you live in Western Australia (WA), the OPHG would like to know more about your and your family’s experiences. If your organisation/group has members who are based in WA, please feel free to pass on this invitation to them. See the flyer for the full details.

Stakeholder consultation focus groups

The OPHG is holding a number of stakeholder consultation focus groups for those living in WA with a rare, genetic or undiagnosed condition and/or their families. Your participation will help to shape the future services and system navigation for those living with genetic, rare and undiagnosed conditions across Western Australia.

The details are listed below.

Location: Face to face in Perth CBD (address to be provided) with online video conference options available.
Dates: Participants may choose from a morning or evening session on 2nd, 3rd, 8th or 9th of February.
Why: Community input plays a critical role in how future services are designed to create better outcomes.
RSVP: To learn more or register your interest please email genomics@health.wa.gov.au or call 08 9222 2239.

Participants will be renumerated by the OPHG for their time.

See the flyer for the full details.