Relevant Organisations2019-10-29T10:56:03+00:00

Relevant Organisations

Web sites offering information about Amyloidosis,
support, and practical help.

Australia

NZ ATTR Amyloidosis Patients Association (NZAPA)

Information to raise Awareness and offer Support to patients and carers with ATTR.

AMYLOIDOSIS ALLIANCE –  the voice of patients.

FOCUS

To make significant contributions to the quality and cure of Amyloidosis patients by exchange of experience and constructive interaction with other players at an international level.

Vince O’Donnell who has hereditary ATTR (ATTRv) is the Australian ATTR representative on the AA see “Patient’s experiences”

Vince’s goals for AA in Australia are:

  • To participate in the various activities of the Amyloidosis Alliance-The Voice of Patients.
  • The development of an Australian network that can facilitate the exchange of experiences between ATTR patients and their families.
  • The development of a strategy to encourage more specialists to consider Amyloid Transthyretin as a possible diagnosis.
  • Work towards improving access to resources, supports and appropriate medical attention for people diagnosed with ATTR?
  • Contact Vince for more information: vnt1955@icloud.com

National Amyloidosis Centre London

This site contains information on:

  • All types of amyloidosis.
  • Separate patient and family information sheets on different types of amyloidosis
  • Information for doctors and health professionals.
  • Research and treatment trials at the NAC and around the world.
  • Quarterly “on line” newsletters.
  • Patient forum.

Myeloma UK

  • Information on AL amyloidosis only.
  • Essential Guide to AL amyloidosis

https://www.myeloma.org.uk/wp…/Myeloma-UK-AL-amyloidosis-Essential-Guide.pd.

On line newsletter “AL Amyloidosis Matters”

Amyloidosis Foundation

  • Information about all types of amyloidosis
  • and treatments.
  • Webinaires
  • Support help line.
  • Support groups.
  • On-Line Newsletters.

Amyloidosis Research Consortium (ARC)

Goal of ARC

  • To help improve understanding of the systemic amyloid diseases by bringing together experts in the field to work as a team on cutting edge research and develop a pipeline of key clinical trials and promising therapies.
  • Information about amyloidosis.
  • Research projects/questionnaires.

Amyloidosis Support Groups

  • Support groups around the USA
  • Information about amyloidosis.

Brigham and Women’s Cardiac Amyloidosis Services

  • Information about cardiac amyloidosis
  • Professor Rodney Falk – video “Understanding Amyloidosis”

Boston Amyloidosis Service

  • Information about all types of amyloidosis
  • Treatment and trials
  • Patient stories

Mayo Clinic Amyloidosis Services

Information on all types of amyloidosis

International Society of amyloidosis

MISSION

To promote research, education, clinical studies (including diagnosis and treatment), conferences and symposia on all aspects of amyloidosis worldwide.

  • Information about ISA
  • Meetings
  • Journal “Amyloidosis”
  • Membership