NEWS – ACTIONS

Connecting stakeholders of the Ataxia world to advance research and therapy development The conference The European Ataxia Conference was organized as a two-day hybrid networking event aiming to advance research and therapy development for ataxias, a group of rare neurological disorders affecting balance, coordination, and speech. The conference was held in Pieria, Greece, on the […]

The second European Research Conference on Ataxia will be held 20-21 May 2023 in Pieria, Greece. The conference The goal of the European Ataxia Conference is to present new therapeutic approaches and research results to the patients through the patient groups, and the scientific community. This networking event will provide patients with the opportunity to […]

Dear Friends,  I am pleased to let you know about a new exciting moment for our community!   ‘The FA App’ is now available!   This free app is really amazing. It allows all of us community members (FAers, family, friends) to    Connect with one another   Read the latest FA news and blogs and […]

A Call to Action was held from January 5, 2021 – January 20, 2021 where the entire FA community (individuals with FA, family, friends, caregivers, supporters, other rare disease advocates) to sign-on a letter to the Food and Drug Administration (FDA) and Reata Pharmaceuticals. This letter requests Reata to submit a New Drug Application (NDA) […]

2020 was a very important year for us, as we have introduced our Association as a community and a voice representing all FA patients in Greece. The Association’s goal is to put a spotlight on the issues our patients are dealing with and underline the need for supporting their fight against this rare disease.

We’re excited to host the 2021 conference 100% online, broadening the event’s reach and making it accessible to our global community. No masks required since you will be joining us from the comfort of your own home. (You can even come in your pajamas!) Whether this is your first time attending AAC or your 64th, […]

Over 250 experts set out recommendations for the next decade of rare disease policies

The fourteenth Rare Disease Day, to be celebrated this year on 28 February, will see thousands of people in all parts of the world connect virtually to advocate and raise awareness for people living with a rare disease. EURORDIS, the 62 National Alliance patient organisation partners and hundreds of other patient organisations from over 100 countries have collaborated […]

The 1st International Conference on Rare Diseases(Greek Chapter), held online March 1 and 2 2021 focusingon: “Building the path from Diagnosis to Access” was completed with great success.

The 1st International Conference on Rare Diseases “Building a Pathway from Diagnosis to Access” recognises that the next decade holds great potential for improvement and that while we cannot predict the future, we all have a role in preparing for it.

Last update March 2021

FARA has prepared a letter to send to the Food and Drug Administration (FDA) and Reata Pharmaceuticals. This letter requests that Reata submit a New Drug Application (NDA) on an urgent basis and FDA to exercise the flexibility granted by law and contained in FDA guidance in considering approval of an NDA for Omaveloxolone in […]