ACC Support UK is the result of a real collaborative effort between two rare disease charities, AMEND and the NET Patient Foundation. The following staff from those charities undertake the work of ACC Support UK:
Jo Grey, AMEND CEO
Jo is the CEO of the Association for Multiple Endocrine Neoplasia Disorders (AMEND) and a rare endocrine disease patient herself. She has overseen many different projects in her time working for AMEND, including writing most of the available patient information resources. Jo was diagnosed with MEN type 2A in the year 2000, losing her thyroid and both adrenal glands along the way. She was immediately fascinated with not just her own condition, but with the wider world of rare endocrine diseases.
Jo juggles her AMEND role and medical condition alongside looking after her two beagles, Dave and Doug.
Nikie Jervis, NET Patient Foundation Specialist Nurse
Nikie joined the NPF in November 2015. Nikie is responsible for supporting NET patients and their families throughout the U.K., whether face to face, through NET Natter groups, online or our advice line.
Education and information is an essential part of providing this support : from patient resources to education events to providing healthcare professionals with information, support and advice.
Prior to joining the NPF, Nikie worked as the Lead Nurse Specialist for NET at Kings Healthcare Partners ENETs Centre of Excellence. She has been a NET nurse specialist for more than 20 years, with a background in HPB (Liver, pancreas, bile duct and small bowel disease including cancer) and education.
Helen Blakebrough, AMEND Administrator
Helen has worked at AMEND since 2014 and provides takes care of all our membership inquiries and event planning among many other things.
Helen is based in the AMEND office in Tunbridge Wells with Jo Grey.