Country

Scotland

Charity number

SC046480

Status

Active

Registered

April 15, 2016

Legal form

SCIO (Scottish Charitable Incorporated Organisation)

Address

Contact

Website

pachyonychia.org

Activities

'It makes grants, donations, loans, gifts or pensions to individuals','It makes grants, donations or gifts to organisations','It carries out activities or services itself'

'the advancement of education','the advancement of health','the relief of those in need by reason of age, ill-health, disability, financial hardship or other disadvantage'

PC Project Europe connects patients, researchers, physicians, and industry partners to help those who suffer from the debilitating effects of PC. We are a subsidiary of our parent company the PC Project, based in the United States. We engage with patients and professionals, offer support to patients and their loved ones, and partner with scientists and industry to advance PC research and drug development. We also engage in fundraising activities to support these activities. Pachyonychia Congenita is one of nearly 7,000 rare diseases, 2,000–3,000 of which are rare genetic skin diseases. Together with the PC Project and with the work of our international consortium of professionals, the participation of genetically confirmed patients in our registry, and the support of many givers, we have helped educate the world about PC and are on the path to effective treatments for patients.

Objectives: The organisation's purposes are: To advance education and health by: (a) promoting the study of pachyonychia congenita and improving the standard of knowledge of the means of prevention, diagnosis and treatment of pachyonychia congenita. (b) initiating, encouraging, supporting (whether financially or otherwise) and carrying out research and investigations into pachyonychia congenita and the treatment or cure of pachyonychia congenita and related disorders. (c) providing access to genetic testing and registration in respect of pachyonychia congenita and other rare genetic diseases. (d) organising and encouraging a community of professionals including physicians and scientists to collaborate in efforts to find effective treatments for pachyonychia congenita and related disorders. To relieve those in need due to ill health through the provision of care, support and practical assistance to sufferers of pachyonychia congenita and related disorders and assisting sufferers of pachyonychia congenita and related disorders to live better, more fulfilled lives through the facilitation of a range of initiatives including those directed towards social inclusion.

Areas of operation

Main operating location

Glasgow City

Geographical spread

UK and overseas

Finances

Nearby

• St Mark's Coptic Orthodox Church: Kirkcaldy 0.1 mi
• Heartstart Discovery 0.3 mi
• The Business Connection 0.3 mi
• The Dundee Bridge Club Limited 0.3 mi
• West End Out of School Club 0.2 mi

Data

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