Below is a list of resources which you may find useful. If you find a resource which you have found helpful and you think may help others, whether or not it is internet-based, do contact us and we can enter it on this page.
National Renal Complement Therapeutics Centre
www.atypicalhus.co.uk A great source of information on C3G and MPGN. The site includes information for both patients and clinicians. There is also useful information about how the diseases can be classified.
Achillion C3G Education Pages
www.wec3g.com/ Achillion is a pharmaceutical company based in the USA that is carrying out research in to possible new drug treatments for C3G diseases. The C3G patient support program, WeC3G™ is sponsored by Achillion.
In addition links to information on Achillion’s C3G clinical trials including the sites that are planned, the sites that are open, and the contact information for these trials can be found below. They have a site open in Melbourne, Australia with plans to have clinical trial sites in the United Kingdom, United States, Belgium and Netherlands so far.
•Proof of Concept Study for 6 Month Treatment in Patients With C3 Glomerulopathy (C3G): clinicaltrials.gov/show/NCT03369236
•Proof-of-Mechanism Study to Determine the Effect of ACH-0144471 on C3 Levels in Patients With C3G or IC-MPGN: clinicaltrials.gov/show/NCT03124368
National Kidney Federation (NKF)
www.kidney.org.uk . Largest kidney charity in UK, run by kidney patients for kidney patients. It has a good clear website
British Kidney Patients Association( BKPA )
www.britishkidney-pa.co.uk It helps kidney disease patients, families and kidney units during times of need. Clear website
Kidney Research UK ( KRUK)
www.kidneyresearchuk.org The leading national charity dedicated to research that will lead to better treatments and cures for kidney disease. It also provides information for patients and raises vital awareness of kidney-related issues among the general public.
Rare Disease UK (RDUK)
www.raredisease.org.uk A national alliance for organisations representing the interests of those with rare diseases and campaigning on their behalf. RDUK is a good source of information about high level activity in the health sector as it affects rare diseases
The Specialised Healthcare Alliance (SHCA)
www.shca.info. Similar to RDUK and describes itself as a coalition of patient-related groups and corporate members which campaigns on behalf of people with rare and complex conditions in need of specialised care in UK. Another great source of high level information about Government’s attitude to rare diseases.
National Institute for Health and Care Excellence ( NICE )
www.nice.org.uk Sponsored by the Department of Health, but operationally independent of both it and the NHS, NICE is a non-departmental public body (NDPB) which provides national guidance and advice to improve health and social care in England. Among other things it gives guidance on medicines for use in England including medicines for rare diseases which it assesses under its Highly Specialised Technology evaluation process.
The Renal Association
www.renal.org is dedicated to the prevention and treatment of renal disease, but also contains a lot of information of interest to patients. It also has an arm dealing specifically with rare renal diseases, including Membranoproliferative Glomerulonephritis and Dense Deposit Disease at www.rarerenal.org
www.davita.com can be a useful source of information and includes a large recipe collection. Please be aware that this is a US site, and that US and UK kidney guidelines may differ.
Action for Sick Children
www.actionforsickchildren.org.uk is a large charity dedicated to ensuring that UK healthcare meets the needs of sick children and their families.
https://kidneeds.lab.uiowa.edu/ is a US site which aims to find a cure for Dense Deposit Disease (DDD).
www.infokid.org.uk is a UK based organisation providing information for parents and carers about kidney disease in children.
Kids Kidney Research
www.kidskidneyresearch.org is a leading paediatric charity and funds research into kidney diseases that affect children
www.charitycommission.gov.uk is the regulator for charities in England and Wales. MPGN/DDD Support Group is registered with the Charity Commission.
‘MPGN and DDD Kidney Support Group’
This is an open group run by Sarah Whittall. Does what it says on the tin!
‘MCGN/MPGN Type 1’
Deals solely with MPGN Type 1. This is run by Ali Stevens. It is open to members and joining is easy – the instructions are on its main page.