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 Facilitating patient Campaigning for a groups to evolve into groups to drive the receptive research effective campaigners development of environment for change treatments

What are fu fundamental diseases? Fundamental diseases are extreme and rare genetic disorders that offer a unique opportunity to better understand other diseases, including many common conditions. Familial Hypophosphatasia Neuroacanthocytosis Alkaptonuria Congenital generalised Hypercholesterolemia lipodystrophy Heart disease Osteoporosis Parkinson’s and Osteoarthritis Type II diabetes Huntington’s

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

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

Campaigning 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.

Fundamental Diseases: It’s Time To Care Launched on 28 th 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