Call for testimonies on Amyloidosis

Call for testimonies on Amyloidosis

Dear members of our committed community,

We need your testimonies for World Amyloidosis Day on 26 October!

We are launching a major awareness campaign to highlight the impact of all forms of amyloidosis, which are disrupting many family lives around the world.

If someone close to you has a form of amyloidosis, your experience and testimony could make a real difference to the lives of others going through similar situations.

We warmly invite you to share your personal story by answering these key questions:

  • Does someone in your family have a form of amyloidosis? We’d like to know more about your connection with this rare disease. Your relationship and closeness to the person with the disease will help us to better understand the challenges you have faced.
  • What was it like to be diagnosed with amyloidosis? Being diagnosed with a rare disease such as amyloidosis can be a shocking experience. Share with us your emotions, thoughts and reactions when you heard the news. Your story can inspire and offer support to others in a similar situation.
  • What impact has it had on your family life? Rare diseases often have a profound impact on family life. Tell us how amyloidosis has affected your relationships, your daily life and your future plans as a family. Your experiences may help other families navigate through these challenges.

We understand that these are intimate and personal moments that you will share with us. All testimonials will be treated anonymously, respecting your privacy while giving a voice to your experiences. Your story can bring light to those seeking answers and hope in their fight against amyloidosis.

To take part:

  • Simply send your story in writing or orally, by September 15 in your native language to the following address:
  • If possible, your story should not exceed one page, i.e. around 250 words.
  • We will also ask you to specify at the bottom of the page that you authorise the Amyloidosis Alliance to use your story anonymously, in full or in part.

Thank you very much for your generosity and courage in sharing your story. Together, we can raise public awareness and offer valuable support to those in need.

With all our gratitude,