Findacure: The Fundamental Diseases Partnership

Findacure: The Fundamental Diseases Partnership [Legal Name: Findacure Foundation] is a national charity that supports patient groups with fundamental diseases. The charity promotes collaboration between patient groups, researchers and the pharmaceutical industry in order to raise awareness and promote research and development of treatments.

Aims

Findacure has three key aims:

• To empower fundamental disease patient groups in their campaigning, fundraising and general governance
• To facilitate patient group involvement in the search for treatments for fundamental diseases
• To support a receptive research environment in which the importance of fundamental diseases is fully appreciated

History

Nick Sireau founded Findacure in 2012 with the understanding that small patient groups require practical advice and training in order to ProgresS. This stemmed from his experience running The AKU Society; a patient group focused on alkaptonuria, an ultra-rare disease that affects his two children. Findacure is currently based in Cambridge, UK. It remains connected with a scientific advisory board composing of health professionals and experts in health consultancy and communications. Since its founding the charity has partnered with two fellow rare disease initiatives: Innorare and the RE(ACT) Community. The charity continues to grow in the fields of patient advocacy and rare disease with the help of grants and donations.

Fundamental diseases

Fundamental diseases are rare genetic conditions that provide essential understanding of the underlying mechanisms of more common diseases. For example, statins, which are now commonly prescribed for high cholesterol, were originally developed for the rare disease homozygous familial hypercholesterolemia. It is estimated that there are 5,000-7,000 rare diseases; the rarity of these diseases resulting in them often being neglected in research and development. Findacure believe by redefining this group of conditions, new medical insights can be unlocked, leading to the discovery of new treatments and therapies.

Current activities

Findacure currently runs training workshops on key issues for patient groups. They ran their first patient workshop in January 2014 and have since run workshops concerning funding applications, European Commission funded research, and clinical trials. The charity also organized scientific workshops, the first of which took place in March 2014, which raised awareness among those in research industry. These workshops have attracted over 100 different patient group and professional representatives.