AMEND news in Tag: PPGL syndromes

New! Young Adults’ Survey

This year, AMEND wants to hear from our younger UK community members aged 12-25 about how their or their sibling’s condition affects them (if at all!), and what they would like to see AMEND do for them by way of activities and resources over the coming months and years. To do this, we have designed two short surveys (ages 18-25 and 12-17) that should take no more than 10 minutes to complete.

Click here for more information

Become a Peer Support Volunteer

We are currently recruiting for Peer Support Volunteers, with a preference for volunteers with MEN2 or MEN3 living in the South, Southeast and East of England.  All Volunteers will receive training (x1 weekend or weekday), must attend an annual Feedback & Development Day (x1 weekend), and will be required to hold x1-2 virtual meetings (weekends or weekday evenings), and x2 in-person meetings (weekends) per annum.

Click here to learn more

Virtual Support Meeting Dates Confirmed

The dates for the first three virtual peer support meetings for 2021 have been confirmed, with the 1st to be held on Saturday 30th January.  All those with or caring for someone with an MEN or PGL syndrome are welcome to join in to share experiences to help others.  Registration is required but the events are free.

Click here for details and to book

New Patient Information Book for PPGL Syndromes

Our detailed information book for patients on inherited phaeochromocytoma and paraganglioma syndromes is now available to download from our website.  In addition, members with PPGL syndromes will received this booklet for free when registering.  We are eternally grateful to our Medical Advisory Team and special advisors for their help in producing this book.

Click here to read and download

Introducing PPGL (SDH) Syndromes Films’ Launch

We are delighted today to launch our new patient experience films about PPGUL syndromes caused by Succinate Dehydrogenase (SDH) mutations.  These were produced as part of our Phaeo Para Support UK project thanks to a grant from Advanced Accelerator Applications.