What is Findacure? Findacure is a charity that promotes the search - - PowerPoint PPT Presentation

What is Findacure?

Findacure is a charity that promotes the search and development of treatments and cures for fundamental diseases, on behalf of patients and those who care for them. We do this by:

Empowering patient groups to evolve into effective campaigners for change

Facilitating patient groups to drive the development of treatments Campaigning for a receptive research environment

Fundamental diseases are extreme and rare genetic disorders that offer a unique opportunity to better understand other diseases, including many common conditions.

What are fu fundamental diseases?

Familial Hypercholesterolemia Heart disease Alkaptonuria Osteoarthritis Neuroacanthocytosis Parkinson’s and Huntington’s Hypophosphatasia Osteoporosis Congenital generalised lipodystrophy Type II diabetes

We aim to help patients with fundamental diseases set up entrepreneurial patient organisations so that they can build networks with the scientific and medical sector in order to develop treatments. We are organising a series of workshops with expert speakers covering key issues for new patient groups. Topics include:

Empowering patients

Living with a fundamental disease How to manage a patient group Collaborating on clinical trials Working with the pharmaceutical industry Working with academia to develop research

Empowering

Facilitating patients to develop treatments

We work with motivated patients to introduce them to clinical, scientific and pharmaceutical networks and help them draw up plans for supporting their groups and developing treatments. Findacure is currently:

Advising on the EU SYBIL project focused on skeletal diseases Supporting Action for A-T with research development for ataxia- telangiectasia Advising patient groups on a gene therapy for Duchenne muscular dystrophy

Facilitating

Campaigning for research

We aim to initiate and facilitate a conversation around the importance of researching fundamental diseases among academics, researchers, clinicians, biotech, and pharmaceutical companies. We held the First Scientific Workshop on Fundamental Diseases in March 2014. It was attended by 36 people representing four universities, nine research teams, three pharmaceutical representatives, four biotechs, and nine medical charities.

Campaigning

Fundamental Diseases: It’s Time To Care

Launched on 28th April 45 day campaign on Indiegogo Aim: Raise $25,000 to continue our workshops and build and online toolkit for patient groups igg.me/at/f-d-care #time4FD