About Rare Disease UK

We work with our supporters to raise the profile of rare diseases across the UK. 

We seek to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases.

Rare Disease UK is focused on making sure the new UK Rare Diseases Framework is as successful as possible, and to ensure that patients and families living with rare conditions have equitable access to high quality services, treatment and support.

Rare Disease UK is a campaign run by Genetic Alliance UK, the national charity of over 200 patient organisations, supporting all those affected by genetic conditions. 

Since June 2009, we have campaigned for the development and implementation of an effective strategy for rare diseases in the UK. We believe that patients affected by rare disease should receive the high quality services, treatment and support they need.

In order for Rare Disease UK to accurately reflect the needs of the rare disease community in our work, we carry out activities to capture the experiences of those living with, or working in the field of, a rare disease. This includes conducting surveys of patients and families, consulting with our members and a wider audience on the issues that affect them, and holding meetings, workshops and conferences to provide the opportunity to gather evidence and collect opinions.

Rare Disease UK works on behalf of all our supporters to ensure that the voice of the rare disease community is heard by all four governments and health departments of the UK. Our Patient Empowerment Group is a key tool in ensuring that there is a representative, informed and unified voice for the rare disease patient community in the implementation of the UK Strategy for Rare Diseases. 

We have accumulated a vast knowledge base on our interactions with patients, families, carers and patient organisations and are happy to help anyone with a query on rare diseases.

The Hourglass Mission

End the harm, abuse and exploitation of older people in the UK

We have nearly 30 years’ experience as Action on Elder Abuse and over that time our work has touched tens of thousands of people, it’s shaped government policy and amplified the issue in national press. That’s why Hourglass is so vital. 

As the UK’s only charity focused on the abuse and neglect of older people, we staff a 
free-to-call helpline. It’s an absolute lifeline for older men, women and their families suffering from the five forms of abuse: physical, psychological, financial, sexual or neglect. 

We recognise at Hourglass that the hard work is just beginning.

Around one million people over the age of 65 are victims of abuse each year in the UK.  
We believe it is woefully under-reported and that it demands parity with other forms of abuse in the social consciousness and in terms of funding. We need support and understanding of the issue.

With an ageing population, we need to turn the hourglass for millions of people before it’s too late.

But how will Hourglass achieve this?

We’re far more than just a helpline. We will collaborate with key stakeholders and other frontline organisations to nurture our safer ageing agenda. We also want to create programmes that change lives and ways of thinking – and we need your help to make this possible.

This isn’t about growing old gracefully. Safer ageing is about creating environments and procedures so that older people are not put at risk of abuse or neglect. Just as crucially: it’s about empowering older people so they can, where suitable, live their lives independently and fully trusting those people around them.

We’re urging a change in laws: the criminal justice system must try harder to support the older people and make safer ageing possible. We’ll push for harder sanctions for those that abuse or neglect older people.

We’ll also commission research to provide valuable data and raise the profile of our cause through the local and national press.

We’re pledging to raise £2 million by 2023, to help 10,000 victims of abuse or neglect, and to provide pro-bono legal support for at least 1,000 people. We also want to make our vital helpline a 24/7 operation.

Hourglass believe in safer ageing and stopping abuse for the elderly. For 30 years we’ve been at the frontline, but we’re just getting started.

Our research

120 years of life-saving discoveries

Cancer Research UK was formed 20 years ago, in 2002. However, our history goes back much further, to 1902, with the founding of the Imperial Cancer Research Fund. Thanks to supporters like you, our pioneering work into how to prevent, diagnose and treat cancer has benefitted millions of lives over the past 120 years. Find out more about how our research has already made a difference to patients and what we are funding right now. 

Our vision for a better future
We want to bring about a world where everybody can lead longer, better lives, free from the fear of cancer.
A world where:

Some types of cancer are effectively eliminated  
Many more are prevented from developing in the first place 
People who do develop cancer are diagnosed at the earliest possible stage so they can be successfully treated  
Treatments are more effective, kinder and more targeted, so people can lead better, more fulfilling lives  
Everyone shares in this progress equally, regardless of who they are, where they’re from or what type of cancer they have  
This strategy offers the one thing we all seek: hope. Hope that the more we discover about the causes of cancer, the more this can be used to prevent it. Hope that discoveries will also lead to a better understanding of how cancer affects our bodies, leading to a better quality of life. Hope that more people will be able to live well with the disease where a cure is not yet an option. Most importantly, it gives us hope that these discoveries will lead to more options for more of us.

From our patient representatives - Ally Boyle, Patrick McGuire, Angela Polanco and Claire James

What We Do

Success After Stroke continues to go from strength to strength, providing help and support for our members.

Success after Stroke, began in the year 2000.  It became a registered Charity in 2006 and moved to larger premises at The Stevenson Centre, Great Cornard, Suffolk.  We are affiliated to The Stroke Association and have been recognised by them on two occasions for the work we do in the community.  In 2014 we were given an award by Babergh District Council for our continued support of stroke survivors.

Success after Stroke is a Suffolk based charity which provides, through our dedicated team of professional therapists and volunteers, care and support to stroke survivors and their families, helping them to regain confidence and rebuild their lives.

Core Objectives


External
To offer our service to those living in Suffolk, Essex and Norfolk while maintaining a focus around Sudbury/South Suffolk.
Increase awareness in the community of SAS by developing contacts with the health service and related bodies.
Co-operate and assist whenever possible with the Health Service, Social Care and charities engaged in related fields to ensure our service remains relevant.
Encourage members to take an active role in promoting and supporting SAS.

Internal
Encourage members to participate in the broad range of therapies on offer to optimise improvement and encourage, but not insist, that they become independent of SAS over time
Avoid damaging the SAS reputation by diluting the service through excessive expansion.
With their and their families’ involvement, provide members with a bespoke programme of therapies and activities, with clear objectives, and with the stated expectation that members help themselves as much as they can.
Maintain maximum involvement of those with a medical knowledge of stroke at Housekeeping and Trustee meetings.
To monitor the wellbeing of vulnerable members to ensure there is the correct support for them in the community.
Ensure representation of all SAS stakeholders at the committee level.


Therapies/Records/Monitoring
Operate a programme to evaluate the progress of Stroke Survivors, or lack of it, to discuss with families and work out the way ahead, implement a timetable of changed pace and evaluate results.
Ensure training/instruction of all volunteers and therapists is current to ensure continuity of support and a programme of rehabilitation for members.


Finance/Compliance
To maintain uncommitted reserves sufficient to cover 100% of anticipated recurring annual expenditure.
Create and implement the correct balance between in-house funding, including members’ own fundraising programmes, and external grants/donations. These initiatives should not put undue pressure on the volunteers or the regular pool of donors.


Continually review, but in any event not less than every six months, legislation that covers the areas of employment law, Health and Safety, provision of care in the community, Charity Commission guidelines as well as liability insurance, and ensure its implementation where necessary or possible.

Logo

© Copyright. All rights reserved.