Useful Resources

Useful Resources

ABPI

The ABPI represents innovative research-based biopharmaceutical companies, large, medium and small, leading an exciting new era of biosciences in the UK.

www.abpi.org.uk

CASMI

CASMI is a partnership between Oxford University and UCL, created to develop new models for medical innovation.

www.casmi.org.uk

Genetic Alliance

A national charity of over 150 patient organisations supporting all those affected by genetic conditions.

www.geneticalliance.org.uk

Rare Diseases EU

European Conferences on Rare Diseases bring together a range of stakeholders from industry, government and acedemia

www.rare-diseases.eu

UK BioIndustry Association

The BIA's members are responsible for over 90% of biotech medicines currently in clinical development in the UK.

www.bioindustry.org/home

The Wellcome Trust

A global charitable foundation dedicated to achieving extraordinary improvements in human and animal health.

www.wellcome.ac.uk

 

Patient Groups

Astro Fund

Founded in 2001 to raise funds and awareness for research into brain tumours.

Offers information, inspiration and hope for those affected by low-grade gliomas

www.astrofund.org.uk

Muscular Dystrophy Campaign

A UK charity focusing on all muscle and nerve disease. They are dedicated to finding treatments and cures and improving the lives of everyone affected by muscle and nerve disease.

www.muscular-dystrophy.org

Cavernoma Alliance UK

Created by people affected by cavernoma (clusters of abnormal blood vessels mainly found in the brain and spinal cord) otherwise known as cerebral cavernous malformation or cavernous angioma. CA UK's mission is to improve the quality of life for those affected by the condition through education, support, and promotion of research.

www.cavernoma.org.uk

MGA - Myasthenia Gravis Association

Voluntary organisation with charitable status, whose funds are directed into three main areas: the support of research into management and cure of the disease (which is neuromuscular disorder); the provision of a national support network; increasing public and medical awareness of myasthenia gravis.

www.mga-charity.org

Myositis Support Group

A UK charity providing advice and support to individuals and their families affected by Dermatomyositis, Polymyositis, Inclusion Body Myositis and Juvenile Dermatomyositis.
They also raise funds and promote medical research to improve the diagnosis, treatment, management and understanding of these rare illnesses.

www.myositis.org.uk

BANA - British Acoustic Neuroma Association

Organised and administered by people affected by acoustic neuroma.

www.bana-uk.com

Meningioma UK

Provides help and information for anyone whose life has been touched by this rare tumour of the brain or spinal cord.

www.meningiomauk.org

Brain and Spine Foundation

Aims to improve the quality of life for people with brain and spine conditions and to reduce neurological disability by providing a national focus for information, education and resources.

www.brainandspine.org.uk

Brain Tumour UK

Works closely with patients, their families, healthcare professionals, scientists and related organisations to raise awareness amongst key decision-makers, service providers and the wider public.

www.braintumouruk.org.uk

EPDA - European Parkinson's Disease Association

European Parkinson's disease umbrella organisation

It represents 45 member organisations from 36 European countries and advocates for the rights and needs of more than 1.2 million people with Parkinson's and their families.

www.epda.eu.com

OcuMel UK

Patient group aiming to provide help for ocular melanoma sufferers within the UK through a helpline website and forum.

First annual conference was in September 2011, occasional patient/doctor forums organised.

www.ocumeluk.org

British Skin Foundation

UK charity dedicated to skin disease research, including melanoma.

Previous research grants total over £8m and generates revenue through sponsorship.

www.britishskinfoundation.org.uk

Bowel Cancer UK

Charity raising bowel cancer awareness; campaigns for better treatment and support and provides information and advice.

www.bowelcanceruk.org.uk

Beating Bowel Cancer

UK charity set up in 2000 campaigning to influence healthcare policy and increase awareness of bowel cancer by distributing informational material.

www.beatingbowelcancer.org

Marie Curie Cancer Care

Charity providing free nursing care to the terminally ill, caring for 50% of all cancer patients who die at home.

Cares for 29,000 in the community and provides the largest number of hospice beds outside the NHS.

www.mariecurie.org.uk

National Cancer Research Institute (NCRI)

UK wide partnership between charities, health departments, research councils and industry, promoting collaboration and communication in cancer research.

Launched in 2001, with 22 member organisations including Cancer Research and the Department of Health.

www.ncri.org.uk

The Patients Association

A healthcare charity that runs a variety of campaigns for improvements to UK health and social care services. They run a helpline to answer patients’ queries and also listen to their views.

The association has been running for almost 50 years and has a database of over 14,000 cases for monitoring problems and trends.

www.patients-association.com

MND Association

A national charity providing support for motor neurone disease patients and funding global research into the disease.

The association has over 3,000 volunteers in the UK.

www.mndassociation.org

Experimental Cancer Medicine Network Centre

Supported by Cancer Research UK and the UK health departments, the organisation seeks to provide new therapies for patients.

Over a period of five years they developed a network of centres across the UK spending £35 million.

www.ecmcnetwork.org.uk

Rare Disease UK

RDUK has a network of over 1,300 members including ‘academics, clinicians, industry, individual members and patient organisations.’

Their main aim is to campaign for an effective strategy for rare diseases in the UK.

www.raredisease.org.uk

SMA Trust

The SMA Trust is a UK registered charity working to fund medical research into Spinal Muscular Atrophy (SMA).

www.smatrust.org

The Mesothelioma Center 

Works to aid patients and families affected by asbestos-related diseases, such as malignant mesothelioma. Provides free information and resources, such a Doctor Match Program and Patient Advocates who work 24/7 to provide answers and support.

www.asbestos.com

Mesothelioma Guide

Mesothelioma Guide helps in the fight against asbestos-related cancer. Their mission is to guide mesothelioma patients to better health care options and to find a cure.

www.mesotheliomaguide.com

Mesothelioma Resource Online

MesotheliomaSymptoms.com is dedicated to helping mesothelioma victims and their families.

www.mesotheliomasymptoms.com

Mesothelioma Help

Mesothelioma Help is dedicated to aiding the diagnosis of Mesothelioma.

www.mesotheliomahelp.org

Mesothelioma Specialists

Their goal is to partner with organizations to spread awareness about the dangers of asbestos exposure.

www.mesotheliomaspecialists.org

Mesothelioma Prognosis

A small team of healthcare professionals, patient advocates, and communication specialists who have one goal: to lead the way in supporting and encouraging mesothelioma patients and their families.

www.mesotheliomagroup.com

Mesothelioma Help Now

Mesothelioma Help Now are here to educate and support mesothelioma patients and their families.

www.mesotheliomahelpnow.com

Cord Blood Center

An organisation dedicated to promoting the benefits of cord blood banking. Umbilical cord blood has helped children survive over 80 diseases including leukemia, lymphoma, and anemia.

www.cordbloodbanking.com

Leiomyosarcoma.org

Leiomyosarcoma (LMS) is a rare form of cancer that originates in the smooth muscle cells. Understanding the causes of LMS is vitally important to helping ensure early recognition and treatment.

www.leiomyosarcoma.org

Cerebral Palsy Symptoms

The mission at CerebralPalsySymptoms.com is to provide the public with accurate and up to date information on the many aspects of cerebral palsy and other birth injury complications.

www.cerebralpalsysymptoms.com

Cerebal Palsy

Cerebral Palsy Guidance is an educational support website dedicated to providing parents with detailed information on a complex condition of cerebral palsy.

https://www.cerebralpalsyguidance.com/cerebral-palsy

DrugDangers

DrugDangers is a US website which aims to keep the public educated and informed of all defective medical devices and dangerous medications that are currently on the market. As an online resource sponsored by Seeger Weiss LLP, DrugDangers strives to provide accurate, relevant medical information all in one place.

www.drugdangers.com

TreatMesothelioma

https://www.treatmesothelioma.org/mesothelioma/uk/

The Campaign