A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

Links & Alliances

aHUSUK has developed links and alliances with a number of organisations which have aims and interests similar to, or which overlap with our own. Below you can find out more about these organisations and their activities  and  how to contact them:

 

 

The Foundation for Children with Atypical HUS is an American organisation set up by its founders Bill and Cheryl Biermann to fund research into aHUS and its treatment. Since then it has developed to become a major international support network for aHUS sufferers through its website by clicking here.

Prior to the launch of aHUSUK’s website the Foundation hosted a forum for UK aHUS patients and it continues to be an outstanding source of information about aHUS, and to which we refer throughout our website. aHUSUK recommend that people join in the Foundation’s community as well as aHUSUK.

 

In addition to providing support to patients and caregivers, aHUS Canada strives to connect those affected by the condition to establish a Canadian aHUS community, build public awareness and understanding of this very rare and potentially fatal disease and advocate for the best possible care and treatment for patients.

aHUS Canada website is here.

 

 

 

 Our association is born out of the necessity and the concern to know more about this disease, as well as appreciating the relation between this syndrome and other rare diseases.

The objective of this association is to be in contact with aHUS patients, their families, medical and investigative professionals, doctors whose patients suffer from this syndrome as well as other professionals who can contribute information and hope to any ill person.

The urgency of the diagnosis, the efficiency of the latest developed treatments and knowing what will be the future and evolution of transplants – these are the foundations of our anxiety and as such our will to share information on these topics with any family who may need it.

Enter aSHUa website here.

 

There is a Patient organisation in Russia which embraces aHUS patients along with others who have problems with uncontrolled complement activation. They are called Another Life and you can enter their website here.                                                                   http://www.life-complement.com/ 

 

 

European Rare Disease

 

The European Organisation for Rare Diseases, or EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.

There are over 6000 rare diseases in Europe, including aHUSand EURORDIS’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and – directly or indirectly – to fight against the impact of rare diseases on their lives.

Find out more about EURODIS and the RareConnect social network for aHUS patients at this link:

British Kidney Patients Association or BKPA is an organisation which helps people affected by kidney disease and end stage kidney failure. As well as providing information and advice to those with kidney disease apparently they provide direct financial support to patients and their families, as well as to kidney units throughout the UK to help improve services and patient care.

BKPA website link is http://www.britishkidney-pa.co.uk/

The Wales Kidney Patient Association or WKPA is an organisation that is working aHUSUK  and supporting Welsh patients in the case for eculizumab to be made available in Wales. Their website can be seen by clicking here.

 

National Kidney Federation

National Kidney Federation or NKF is another kidney organisation in the UK run by kidney patients for kidney patients. Their specific aim is to promote the best renal medical practices and treatment and health of those with Chronic Kidney Disease (CKD) or Established Kidney Failure (EKF) throughout the UK. They also support the related needs of families and friends who care for kidney patients.

NKF also provide an advocacy service to help with patient problems in a sensitive and compassionate manner and in the strictest confidence. NKF Advocacy Officers can speak up for patients and empower them to make sure th

at their rights are respected and their views and wishes are heard at all times. They also assist patient’s carers and families with self-advocacy and helping them to navigate the health system and represent the views, wishes and needs of patients to decision makers at all levels.

NKF featured an article on aHUS in the Winter 2011 edition of their magazine “Kidney Life”.

Find out more about NKF at :  http://www.kidney.org.uk/

 

orphanet
Orphanet is a portal for rare diseases and orphan drugs . It features aHUS and includes aHUS UK in its patient organisations database. The aHUS section can be accessed by clicking  here.
AHUSUK is a member of the Federation of European association of patients affected by Renal Genetic Diseases, FEDERG

FEDERG’s overall aim is to:

Improve the health and quality of life of all those affected by renal genetic diseases, through advocacy, representation, engagement and collaboration.

FEDERG’s  specific aims are to:

  • · Be the voice of national patient groups (whether formally constituted or unincorporated associations of patients) at the highest institutional level of EU policy making and public health
  • · Lobby to remove inequalities of care and discrimination across the EU
  • · Enable and empower national patient groups to better support patients and families in their own countries
  • · Help researchers in their work to identify and study disease causes, therapies and improved treatments
More information can be found on FEDERG by clicking on here

 

 

RareRenal.org

 

RareRenal.Org is an initiative of the Renal Association and the British  Association for Pedriatic Nephrology to provide information to patients and clinicians about rare renal diseases of which aHUS is one. Renal Disease Groups have been created and overseen by committees of leading authorities for each disease.

The intiative will also embrace the renal disease register or RaDaR which is intended to contain information about patients which can be read by patients themselves. Patients registered may  be invited to take part in research projects.More information can be found on their website by clicking here.

E coli 0157

Haemolytic Uraemic Syndrome Help or HUSH is a registered charity set up in 1997 after the E coli 0157 outbreak in Central Scotland.

HUSH provides help and information for people who have suffered from e coli poisoning and the typical form of HUS it causes, and it also aims to raise public and medical community awareness about E coli 0157, its prevention and the diagnosis /treatment of those affected. HUSH is very active in seeking improvements in hygiene practices in the UK. The website’s testimonies of patients who have suffered from HUS will be familiar and resonate with aHUS patients.

Find out more about HUSH at  http://www.ecoli-uk.com/

 

 

 

AHUS Action is a coalition campaigning for better NHS care for patients with atypical haemolytic uremic syndrome (aHUS) in England. aHUSUK have a patient representative on the aHUS action management committee to provide the patient perspective about the campaign.

More information about aHUS Action can be found on their website  http://www.ahus-action.org

 

atypical haemolytic uraemic syndrome

Atypical Haemolytic Uraemic Syndrome

Finally our “sister” site  aHUS Atypical Haemolytic Uraemic Syndrome  is  at http://www.ahus.org.uk The site was setup to provide information about the first ever aHUS Patients’ conference in the UK and now hosts a video record of the event.

It is recommended viewing!