Resources and Information
In need of some resources and information about Ataxia or other Rare diseases? We have you covered with all the latest podcasts, videos, websites and more. Click on any of the images to take you to the resources.
Health Care and Research Wales 2023 Report.
Minister for Health and Social Services, Eluned Morgan MS, praised the crucial role of good research in improving health and social care services and outcomes in Wales ahead of Health and Care Research Wales’ annual conference. The conference theme was “People make research”, with speakers and topics highlighting the vital part individuals and delivery teams have played in Wales’ research successes over the past year. The very best of these successes are documented in Health and Care Research Wales’ annual report, published Thursday 12 October and launched during the conference at Swansea Arena. Both the conference and the annual report also provided opportunities to look at how to capitalise on this momentum, enhance and safeguard the future of health and care research in Wales; from career development opportunities for research staff at all levels, to significant new funding commitments and calls for greater parity of funding across the UK. Over the last year, Health and Care Research Wales has continued to fund research centres, projects and individual awards including 29 new research awards amounting to investment of almost £4.5million. It also established the Health and Care Research Wales Faculty which aims to support research career development at every level, and built on the success of the COVID-19 Evidence Centre with the launch of the Health and Care Research Wales Evidence Centre, in which it has committed to invest more than £7 million over the next five years.
Podcasts:
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Two Disabled Dudes Podcast
Sean and Kyle are both affected by a rare disease called Friedreich's Ataxia (FA), affecting their balance and coordination, significantly limiting their physical abilities. This podcast is about setting sights beyond the challenges in life and dreaming big. You are guaranteed an emotional rollercoaster and practical thoughts that apply to many areas of life with this podcast.
My Rare Disease
Welcome to 'My rare disease' podcast. This is a platform where I raise awareness of something that affects 1 in 15 people, rare disease. By chatting to patients, health professionals and advocates, we talk about all aspects of rare disease including relationships, mental health and much more. I cannot wait for you to hear some truly inspiring stories from some absolutely amazing people.
The Genetics Podcast
Exploring all things genetics. Dr Patrick Short, University of Cambridge alumnus and CEO of Sano Genetics, analyses the science, interviews the experts, and discusses the latest findings and breakthroughs in genetic research. To find out more about Sano Genetics and its mission to accelerate the future of precision medicine visit:
Rare Cast - Global Genes Podcast
RARECast is a Global Genes podcast hosted by award-winning journalist Daniel Levine. It focuses on the intersection of rare disease with business, science, and policy.
Ataxia, Did You Know?
Curious, knowledgeable wife of an Ataxian. My mission is to share reputable Ataxia information in short, simple, digestible servings. I want the world to become acquainted with Ataxia and the way it robs someone of their balance, coordination, and ability to walk, talk, swallow, and see.
Rarely Heard Podcast
Rarely Heard is a rare disease podcast series that exists to share the stories, experiences, knowledge, insights and voices of those living with some of the world's rarest diseases. These stories should not be Rarely Heard, but widely shared.
Videos:
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Super highlights of Superhero Tri powered by Marvel. 2023
It’s big. It’s bold. It’s the UK’s one & only disability sports series for the Everyday Superhero! Our mission is simple: to create fun, full-throttle, mass-participation sports events where people with disabilities – AKA Everyday Superheroes – call the shots & don’t have to worry about cut-off times or equipment restrictions.
Developing your rare disease patient group from the bottom up.
In this webinar series, you'll explore how rare disease patient groups can attract and retain the right people to ensure the success and longevity of their patient organisation. Discover how to attract and manage volunteers, employ staff and begin succession planning.
Real Families - Living a full life with Ataxia
Ataxia effects co-ordination, balance and speech and has a deteriorating effect on the heart. With the average live expectancy of 35, this man with Ataxia is celebrating his 30th birthday.
My Perfect Family invites us to see the lives of modern families living with various disabilities. We see the highs and lows of being full time carers as well as the eye opening experiences of people with disabilities.
Living with Ataxia
Inspirational video with young people talking about their lives with ataxia. Produced by Ataxia UK and supported by the Roald Dahl's Marvellous Children's Charity.
Living with Ataxia - Hacks
Occupational therapist, Elizabeth Foss, speaks with Charlotte Depew, an Ataxia Support Group Leader, on ways to make everyday living with Ataxia easier.
The Ataxian
In the uplifting award-winning film, The Ataxian, Kyle Bryant, a man living with the fatal progressive neuro-muscular disorder, Friedreich’s ataxia, and a team of friends attempt the most grueling bicycle race in the world, The Race Across America. .
Websites:
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Global Genes
When you’re here, you’re part of a globally connected community committed to eliminating the challenges of rare disease. Global Genes is committed to providing information, resources and connections to all communities affected by rare diseases.
Our RARE Concierge patient service guides are here to help you navigate the complicated world of rare and undiagnosed diseases. No matter where you are in the world, your journey, or what your unique need is, RARE Concierge can help you. Our team has decades of personal and professional experience in rare disease advocacy and support. As patients, caregivers, and advocates, we understand the challenges you and your family face. RARE Concierge can provide resources, education, and important connection free of charge.
Ataxia Global Initiative
The Ataxia Global Initiative (AGI) is a worldwide research platform that has the goal to facilitate the clinical development of therapies for ataxias. AGI´s activities are based on the principles of openness, transparency, flexibility and fairness. Specifically, the AGI promotes sharing of data and biomaterials,
Contributes to the definition of worldwide accepted common standards for clinical research and interventional trials,
Provides information that is relevant to prepare and conduct clinical trials,
Organises and hosts international meetings and conferences to update and educate the field on key issues,
Provides services that support trial readiness,
Offers training and education programmes, and
Provides information about clinical research to people with ataxia and the public.
Euro Ataxia
Euro-ataxia is an international non-profit association whose member organisations work together to help people with progressive ataxia lead their best life. We do this by building a strong organisation that represents people with progressive ataxia throughout Europe. Our Objectives:
To drive forward research and treatment of the ataxias,
To encourage the free flow of information between members on the latest research,
To foster and improve contacts between practitioners interested in the ataxias, and people with ataxia.
To investigate social, political and cultural matters connected to the welfare of people with ataxia, and promote and improve the exchange of this information,
To promote co-operation on an international level between national ataxia organisations,
To raise awareness of ataxia among clinicians, scientists and society.
Health Care and Research Wales
Health and Care Research Wales is a networked organisation, supported by Welsh Government, which brings together a wide range of partners across the NHS in Wales, local authorities, universities, research institutions, third sector and others. We work in close partnership with other government agencies and research funders (both in Wales and across the UK); industry partners; patients; service users; public and other stakeholders. We work together to promote research into diseases, treatments, services and outcomes that can lead to discoveries and innovations which can improve and even save people’s lives.
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Disability Wales
Disability Wales (DW) is the national association of Disabled People’s Organisations (DPOs) striving to achieve rights, equality and independent living of disabled people in Wales.
DW promotes the adoption and implementation of the Social Model of Disability, which identifies that it is environmental, organisational, and attitudinal barriers that disable people and prevent their full participation in society not their medical conditions or impairments
Superhero Series
We believe everyone should have the chance to be active & experience the thrill of taking part in a large-scale sporting event, whether it’s joining the fun at a live event or uniting remotely with Superheroes far & wide to achieve your super mission from your home or neighbourhood. Founded by Paralympian Sophia Warner in 2016, Superhero Series was born out of a lack of sporting events for the Everyday Superhero. We aim to hold bold, fun & inclusive sporting challenges, while also creating a SUPER community for our Superheroes & Sidekicks. That’s why there are no cut-off times or equipment restrictions & you can choose from a multitude of super ways to complete your challenge; whatever suits your own unique superpowers best!
Blogs/ Online Communities:
Scope's online community
We are a community connected by disability. Here, you can make friends, share your experiences, get the advice you need, and discuss the issues that matter to you.