Our activities and events

Fabry Disease Awareness Month

Fabry Disease awareness ribbon

We suspect that many people live their entire lives without knowing the underlying cause of their many Fabry disease symptoms. Many others are diagnosed very late after irreversible organ damage occurs. Increased awareness can help to change these tragic unnecessary circumstances to give people a chance at better and longer lives.

Help us raise awareness throughout April. Share the Fabry Disease awareness ribbon on your social media channels and follow and retweet our Twitter posts to spread the word.

Our members are working hard to raise awareness for Fabry around the world. See the links below for more information about each country.

National Fabry Disease Foundation – USA

For April 2018 Fabry Disease Awareness Month the NFDF have been providing an educational or information post on their Facebook page every day of the month in April.

Find out more about the the Fabry disease awareness ribbon on the NFDF website which was the result of a collaboration across a group of organisations and individuals in the international community. You can also read the story of the Fabry disease community ribbon here.

The NFDF also distribute their My Health Handbook kit and, so far, have distributed about 700 kits to individuals with Fabry disease.

Fabry Australia

Fabry Australia have a new website and some exciting new resources. They are also running a new social media campaign specially for awareness month. The awareness month page has links to their awareness resources. You will also see on their home page an icon for YouTube. This is new to Fabry Australia and they are planning to include more videos as they become available.

Fabry Support & Informatie Groep Nederland

Since 2005 FSIGN has organised every first Saturday of April (in the Fabry Awareness Month April) to be the Fabry women’s day. This was declared as International Fabry women’s day in 2013. This year, FSIGN sent an invitation to a workshop for the 14th time to all female members, who are patient, or mother/partner of Fabry-affected. They plan to share a book of the day.

Japan Fabry Disease Patients and Family Association

In awareness month the JFA have held an open seminar at Fukuoka University Medical hall. The open seminar has two parts: a study session by medical professionals and social information exchange session including a Q&A style consultation. In the study session, Fabry Disease Experts will give lectures on three major topics:
1. Newborn Mass Screening
2. Current Treatments and Employment
3. Clinical Genomics

The JFA hold open seminars in different cities in Japan throughout the year. This April they are also aiming to support patients who live far from the medical hub and medical specialists and each year they try to promote different themes and to improve the environment for Fabry patients and family.


The Fabry International Network

6th Fabry Expert Meeting
8th–10th June 2018 The Vilnius Grand Resort

Ežeraičių g. 2, Ežeraičių km.,Avižienių sen., Vilniaus raj., LT-14200, Lietuva:
www.vilniusgrandresort.com

Draft programme for the FIN Fabry Expert Meeting 2018

Patient Organisation Booking Form

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