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
