ABOUT Phaeo Para Support UK
PPSUK is a branch of the Association for Multiple Endocrine Neoplasia Disorders (AMEND). We are here to break the isolation so often felt by those with these rare diseases, and we would be delighted to welcome you into our ‘family’.
The aim of our website is to direct you as quickly as possible to our support services and to information you can trust on adrenal gland tumours (phaeochromocytomas), and in particular on inherited phaeochromocytoma and paraganglioma syndromes (PPGLs).
Who we are
A short history
PPSUK is a part of the Association for Multiple Endocrine Neoplasia Disorders (AMEND). AMEND is a patient group set up in 2002 to support and inform anyone affected by or interested in multiple endocrine neoplasia disorders and their associated endocrine syndromes and tumours. AMEND is run by patients, for patients, and became a UK registered charity (no. 1099796) in 2003, converting to a registered Charitable Incorporated Organisation (no. 1153890) from January 1st, 2014. AMEND reports to and is regulated by the UK Charity Commission.
In 2008, MEN2A patient (and double phaeo survivor), Jo Grey became CEO and Chair of the Trustee Board and continues to run AMEND today as CEO ably assisted by Administrator, Helen Blakebrough and a committed band of patient, family and healthcare professional volunteers.
In 2008, membership of AMEND was made free to all, and in 2009, AMEND’s free counselling service for volunteers and members was launched.
AMEND works hard forging and maintaining cooperative working alliances with other patient and professional groups around the world in order to ensure the best support possible for many different endocrine tumour syndromes patients. The charity believes strongly in investing in its growing band of volunteers and provides appropriate training wherever possible. Nowhere is this better reflected than in our Regional Volunteers project which was launched in 2018.
In 2019 we began filming our patient experience films about PPGL (SDH) Syndromes (thanks to a grant from AAA), and in 2020 we formally launched AMEND’s latest affiliated group, Phaeo Para Support, its new website (thanks to a grant from the Society for Endocrinology) and patient information book.
Aims of PPSUK and AMEND
To improve the well- being of all persons affected by endocrine syndromes and tumours by:
- Providing support to patients and their families and friends;
- Providing information about the diseases and other relevant issues relating to genetic disorders,
- Promoting a wider knowledge of the diseases among the medical profession to assist in early and accurate diagnosis, and;
- Assisting in future research into the diseases
We are always pleased to hear from you so don’t hesitate to get in touch and see how we can help.
How we are governed (UK)
As a UK registered charity (non-profit organisation), AMEND is regulated by the UK government’s Charity Commission and produces annual reports and accounts. It does not receive government funding.
Board of Trustees
AMEND has a Board of Trustees (Directors) which includes patients, healthcare professionals and other interested parties with specific qualifications. It is the Board’s responsibility to set the organisation’s strategy and to ensure that the charity operates in compliance with the laws of the United Kingdom.
Interested in becoming a Trustee? Just contact us for a chat!
- Click on the individual links below to find out how our Trustees enjoy and value their volunteer roles
- For more information on the roles and responsibilities of Trustees, please visit the National Council for Voluntary Organisations’ website
- Induction and Training is provided!
Click here to see our current Trustee Board, the AMEND Medical Advisory Team and organisations that AMEND is a proud member of.
Who our sponsors are
We are very grateful for all the wonderful support that PPSUK (AMEND) receives in either monetary or in-kind donations and sponsorship as well as individual fundraising.
Click here to see our current and past sponsors.
Annual Reports & Accounts
PPSUK is run by AMEND. As a UK registered Charitable Incorporated Organisation (No. 1153890), AMEND must submit its report and accounts to the UK Charity Commission annually. AMEND was a registered unincorporated charity (no. 1099796) until it became a CIO from 1st January 2014.
You can view both our CIO and our unincorporated charity summaries and Annual Reports & Accounts on the Charity Commission Website
Make a donation
PPSUK is entirely funded by donations to AMEND so your contribution is extremely welcome.
Become a member
Membership of PPSUK is free as are all our information resources, support services and events. By joining it’s easy to meet others in the same boat.
Our private Facebook Group is a secure place to connect with others in similar situations for peers support. Invitations to join are sent upon joining PPSUK.
There’s always something going on at PPSUK and AMEND. Check out the latest news
We are producing an increasing number of videos to help explain complex information.
Beyond words, thank you 💙 pic.twitter.com/S8FSeUbz3l Retweeted by AMEND
4/4 : 3 out of 4 (75%) of MEN1 patients will develop one of several pancreatic neuroendocrine growths and 1 in 10 (… twitter.com/i/web/status/1… Retweeted by AMEND
2/4: ‘Among various pancreatic cancers, pancreatic neuroendocrine tumors (PNETs) account for 2% to 10% of all pancr… twitter.com/i/web/status/1… Retweeted by AMEND
@GalacticZoo Believe there was a problem with the system yesterday but resolved today. Have another go. Thanks!
Please vote for our film: Claudia's Story - Surgery. It's part of our resources for adolescents and young adults w… twitter.com/i/web/status/1…
My vote for meme of the day. pic.twitter.com/FH1YsGCt4K Retweeted by AMEND
pic.twitter.com/oYX3bsCfXe Retweeted by AMEND