to the

Inherited Prion Disease Support Network


The Inherited Prion Disease Support Network was founded by two cousins to develop peer support for others who have been affected by Inherited Prion Disease (IPD). 

We all need emotional support when we, or our loved ones have been diagnosed, or are at risk with Inherited Prion Disease (IPD), this is an incredibly challenging journey.

We hope that our community is a place to share information, contact others in the same situation and most of all feel supported. We are not professional advisors, and cannot provide medical or legal advice. Help is provided through shared experience and peer support with others, who understand.

Please feel free to browse our open pages, however in order to protect people's privacy you will need to become a member to read or participate in discussions on our newsfeed, noticeboard or blog page.

We have a broad range of members in our community including people affected by IPD and members of other associations. 

Over the coming year we hope that others who are affected by IPD will join our community so that we can learn from each other and support each other........we do not have to feel alone.


NEW MEMBERS - you may want to begin by posting a message to introduce yourself (any username can be created to ensure confidentiality). However, you may prefer to browse the pages for a while and simply read what others have written

MAKE FRIENDS - When you join, one of our team will be in touch - we are here to help each other and share support.

SHARE YOUR EXPERIENCES - Post on your page and contribute to the newsfeed.


CONTACT US – You can also contact us at ipdsupportnetwork@hotmail.co.uk

Come and join our page on Facebook, click the link below:


Your Privacy
To protect your privacy pages within our website which hold members information are private and can only be seen by other members. Our website does include public pages for information to non-members, but these pages do not hold members information.

Choose your username with care. Imagine the name appearing alongside your personal information. If you think you may be identified away from the newsfeed or by individuals within your family because of it, choose a username that is more random and less personal.

Posting your personal details (such as phone number, address) or arranging to meet someone in person alone can be unsafe.

Terms and conditions

The Inherited Prion Disease (IPD) Support Network will not share information provided through the registration process to any third party. Except in the event of any complaint about inappropriate use or posts or in case of legal action rising from any message posted by you, the IPD Spport Network reserves the right to reveal your identity and other information we may know about you to comply with due process.

By registering you agree not to participate in mischievous or malicious behaviour which causes damage to us or another individual.

Messages must not be obscene, vulgar, defamatory or libellous, sexually orientated, hateful, threatening or otherwise violate any laws or good morals and practice.

By registering you acknowledge that the IPD Support Network is not under any obligation to monitor or review the news feed (your home page) and you agree that you are entirely responsible for all content that you make available.

We reserve the right from time to time to edit or remove posts that are contrary to the Terms and Conditions or not constructive to the overall purpose and mission of our group without prior contact with the author. Offenders may be banned from participating in the website without prior notice.