The online National Amyloidosis Centre patient support forum (www.amyloidosis.org.uk/forum) has been up and running since the beginning of 2015. It has enabled patients, family members and carers from all over the country to meet and give each other support, advice and encouragement.
The forum has grown and expanded steadily since it went online in early 2015. There are nearly 1000 members and some threads have been viewed more than 22,000 times. The forum is most useful in providing information, support and a feeling of community for people who feel isolated by having a rare disease that most people they meet haven’t even heard of. It provides a channel for patients with amyloidosis, family, friends and carers from all over the UK to connect, communicate and help each other.
To join or find out more visit: National Amyloidosis Centre Patient Forum
Support forum
The online National Amyloidosis Centre patient support forum (www.amyloidosis.org.uk/forum) has been up and running since the beginning of 2015. It has enabled patients, family members and carers from all over the country to meet and give each other support, advice and encouragement.
The forum has grown and expanded steadily since it went online in early 2015. There are nearly 1000 members and some threads have been viewed more than 22,000 times. The forum is most useful in providing information, support and a feeling of community for people who feel isolated by having a rare disease that most people they meet haven’t even heard of. It provides a channel for patients with amyloidosis, family, friends and carers from all over the UK to connect, communicate and help each other.
To join or find out more visit: National Amyloidosis Centre Patient Forum
Support groups
Some patients who attend the National Amyloidosis Centre have set up small local support groups so they can meet up in real life as well. The meetings are very informal – just a chance for patients, families and carers to meet over a coffee, to get to know each other and to chat. The Scotland group have been meeting every two or three months since April 2015, and now includes 13 families from all around Scotland. The meetings are deliberately held in a different venue every time, in order to even out the travel burden a bit for people coming from different parts of Scotland. It’s also been important that the places the group meets up in are cheery and interesting in themselves.
The London group have been meeting since December 2015 and have held most meetings at the Garden Gate Pub near the NAC, and one meeting at the NAC itself, with Dr Wechalekar as a guest speaker. A group for patients around the South Wales region held their first meeting in March 2017 and hope to continue to grow as word gets out in the area. George Turner, who started the Scotland support group: “The support comes from the building of trusted friendships with people who have experienced a similar journey – as a patient or carer, or someone who has lost a loved one to amyloidosis.”
Please contact Miriam for more information: miriam.pepys@ucl.ac.uk
Support groups
Some patients who attend the National Amyloidosis Centre have set up small local support groups so they can meet up in real life as well. The meetings are very informal – just a chance for patients, families and carers to meet over a coffee, to get to know each other and to chat. The Scotland group have been meeting every two or three months since April 2015, and now includes 13 families from all around Scotland. The meetings are deliberately held in a different venue every time, in order to even out the travel burden a bit for people coming from different parts of Scotland. It’s also been important that the places the group meets up in are cheery and interesting in themselves.
The London group have been meeting since December 2015 and have held most meetings at the Garden Gate Pub near the NAC, and one meeting at the NAC itself, with Dr Wechalekar as a guest speaker. A group for patients around the South Wales region held their first meeting in March 2017 and hope to continue to grow as word gets out in the area. George Turner, who started the Scotland support group: “The support comes from the building of trusted friendships with people who have experienced a similar journey – as a patient or carer, or someone who has lost a loved one to amyloidosis.”
Please contact Miriam for more information: miriam.pepys@ucl.ac.uk
Mental health and wellbeing
It is normal to feel emotional, social and physical side effects after a diagnosis and during treatment. Patients and families are encouraged to seek support and share their feelings with whomever they feel most comfortable with.
You can find useful support resources below.
Mental health and wellbeing
It is normal to feel emotional, social and physical side effects after a diagnosis and during treatment. Patients and families are encouraged to seek support and share their feelings with whomever they feel most comfortable with.
You can find useful support resources below.
Need urgent mental health support
If you are having thoughts of suicide, are harming yourself or have thought about it and if you cannot wait to see a doctor and feel unable to cope or keep yourself safe, contact one of the organisations below to get support right away.
- Samaritans- call free on 116 123 or visit the website.
- Shout 85258 offers confidential 24/7 crisis text support for times when you need immediate assistance: text “SHOUT” to 85258.
- If you need help for a mental health crisis or emergency, you should get immediate expert advice and assessment.
Need urgent mental health support
If you are having thoughts of suicide, are harming yourself or have thought about it and if you cannot wait to see a doctor and feel unable to cope or keep yourself safe, contact one of the organisations below to get support right away.
- Samaritans- call free on 116 123 or visit the website.
- Shout 85258 offers confidential 24/7 crisis text support for times when you need immediate assistance: text “SHOUT” to 85258.
- If you need help for a mental health crisis or emergency, you should get immediate expert advice and assessment.
Useful websites
Alnylam have developed a website to support and empower patients and families affected by hereditary ATTR amyloidosis.
Alnylam have also developed a Family Dialogue Tool. We know that it can sometimes be worrying to have conversations with your family about the genetic aspect of hATTR amyloidosis, and so this resource is intended to support conversations with relatives, and provide them with the information they need about hATTR amyloidosis. Find out more about the Family Dialogue Tool.
Akcea Therapeutics have developed a resource called hATTR Change the Course, which is dedicated to supporting the hATTR amyloidosis community.
Other helpful sites
- NHS — Amyloidosis
- National Amyloidosis Centre
- NAC Patient Information Site
- Symptom tracking (printable pdf)
- Symptom tracking app
- Amyloidosis Alliance
- World Amyloidosis Day
- Other charities that offer support for cardiomyopathy:
- AL Amyloidosis
- Amyloidosis Research Consortium
- The Gene People – support for people with genetic conditions
- Cardiomyopathy UK – the heart muscle charity
Useful websites
Alnylam have developed a website to support and empower patients and families affected by hereditary ATTR amyloidosis.
Alnylam have also developed a Family Dialogue Tool. We know that it can sometimes be worrying to have conversations with your family about the genetic aspect of hATTR amyloidosis, and so this resource is intended to support conversations with relatives, and provide them with the information they need about hATTR amyloidosis. Find out more about the Family Dialogue Tool.
Akcea Therapeutics have developed a resource called hATTR Change the Course, which is dedicated to supporting the hATTR amyloidosis community.
Other helpful sites
- NHS — Amyloidosis
- National Amyloidosis Centre
- NAC Patient Information Site
- Symptom tracking (printable pdf)
- Symptom tracking app
- Amyloidosis Alliance
- World Amyloidosis Day
- Other charities that offer support for cardiomyopathy:
- AL Amyloidosis
- Amyloidosis Research Consortium
- The Gene People – support for people with genetic conditions
- Cardiomyopathy UK – the heart muscle charity