Not cancer · Austria
Friedreich ataxia
How is it diagnosed today? You are referred to a neurologist, or a paediatrician for children, for further tests; a genetic blood test can find the gene change responsible for Friedreich's ataxia. NHS
What do you need help with?
- Join a trialStudies open to new patients in your country, and abroad if you want.3 open trials in Austria
- Offer tissue or dataGive a sample or your health data to research.
- Get supportPatient groups, money and work, help for family.
- Access and costGetting a treatment that is not on offer here, and who pays.
- Questions for your doctorReady lists to print or copy before your next visit.
- Don't pay for thisOffers with no proof in people, and what to check first.
Where treatment stands
Four steps, from proven to unproven.
Approved in Austria
Usual treatment: Therapy and medicines for symptoms. NHS
1 medicine is approved for this disease in Austria:
- Omaveloxolone (Skyclarys) – approved in 2024
An EU approval is valid in Austria. We did not check whether they are sold or paid for there. Checked in the regulators' own texts on 11 Nov 2026.
Being tested in people
3 open trials in Austria, 18 worldwide. See the trials
- Nomlabofusp (Phase 3)
- Omaveloxolone (Phase 3)
- Vatiquinone (Phase 3)
- CTI-1601 (Phase 2)
Only in the lab or in animals
Of the 20 newest articles, 3 were in animals and 0 in the lab. See them
No proof it works
We checked 4 things people say help with this disease against the research. See how far each has been tested
No trial in people on record yet:
- Metformin (only single reports in people)
- Vitamin D (only single reports in people)
- High-dose vitamin C (lab studies only)
Join a trial
Studies that are taking new patients in Austria. The trial team decides who can join. Change the country at the top.
Phase 1: first tests in people · Phase 2: does it help? · Phase 3: compared with the usual treatment
3 open trials in Austria
Observing How Friedreich Ataxia Progresses Over Time in Patients
NCT06016946 · ClinicalTrials.gov
- Innsbruck – Medical University Innsbruck, Department of Neurology
No age limit given in the registry
Contact the trial teamTracks long-term safety of omaveloxolone in people with Friedreich ataxia
NCT06623890 · ClinicalTrials.gov
- Innsbruck – Medizinische Universität Innsbruck
Age 16 and over
Contact the trial teamStudies daily life and feelings of people with Friedreich ataxia
NCT05943002 · ClinicalTrials.gov
- Innsbruck – Klinik für Neurologie, Medizinische Universität Innsbruck
Age 12 and over
Contact the trial team
Available abroad (22 trials)
Nearest region first. Travel and treatment abroad are often not paid for; ask your health insurer first.
Brain Wave Recordings in People With Friedreich's Ataxia
NCT07095062 · ClinicalTrials.gov
Countries: Italy
- Conegliano, Italy – IRCCS Eugenio Medea Associazione "La Nostra Famiglia"
Ages 8 to 60
Contact the trial teamFollowing heart disease in people with Friedreich ataxia
NCT06865482 · ClinicalTrials.gov
Countries: Czechia, Germany, Spain and 5 more
- Prague, Czechia – Motol University Hospital and the Second Faculty of Medicine
- Tübingen, Germany – University Hospital Tübingen
- Majadahonda, Spain – Hospital Univeritario Puerta de Hierro de Majadahonda
Age 6 and over
Contact the trial teamLong-term study of vatiquinone in people with Friedreich's ataxia
NCT07681713 · ClinicalTrials.gov
Countries: Belgium, Spain, France and 3 more
- Brussels, Belgium – Hôpital Érasme (Hôpital Universitaire de Bruxelles)
- Barcelona, Spain – Hospital Sant Joan de Déu
- Paris, France – Institut Du Cerveau Et De La Moelle Epiniere
Ages 7 to 21
Contact the trial teamTesting game-based movement measurement in people with Friedreich ataxia
NCT07731971 · ClinicalTrials.gov
Countries: United Kingdom
- Exeter, United Kingdom – University Of Exeter
Ages 12 to 50
Contact the trial teamOmaveloxolone and swallowing problems in people with Friedreich's ataxia
NCT07013292 · ClinicalTrials.gov
Countries: France
- Nice, France – CHU Nice
Age 16 and over
Contact the trial teamUltrasound imaging of nerves in people with Friedreich ataxia
NCT07508631 · ClinicalTrials.gov
Countries: France
- Nice, France – CHU de Nice
Ages 18 to 70
Contact the trial teamDeveloping a Fall-Risk Test for Adults with Neuromuscular Disorders
NCT06605612 · ClinicalTrials.gov
Countries: Germany
- München, Germany – Friedrich-Baur-Institut, Neurologische Klinik und Poliklinik, LMU Klinikum, Ludwig-Maximilians-Universität München
Ages 18 to 65
The registry has not updated this record for a long time. Ask the team whether it is still open.
Contact the trial teamWalking aids with training and falls in people with muscle and nerve diseases
NCT07072676 · ClinicalTrials.gov
Countries: Germany
- Bad Feilnbach, Germany – Medical Park, Bad Feilnbach, Reithofpark
Ages 65 to 65
The registry has not updated this record for a long time. Ask the team whether it is still open.
Contact the trial teamStudy of NBIB-223 Gene Therapy in Friedreich's Ataxia (FACET)
NCT07934303 · ClinicalTrials.gov
Countries: United States
- Gainesville, United States – hospital not given
- Iowa City, United States – hospital not given
- Los Angeles, United States – hospital not given
Ages 8 to 40
Contact the trial teamTests SGT-212 gene therapy in people with Friedreich's ataxia
NCT07180355 · ClinicalTrials.gov
Countries: United States
- Columbus, United States – The Ohio State University
- Los Angeles, United States – The University of California, Los Angeles (UCLA)
- Philadelphia, United States – The Children's Hospital of Philadelphia (CHOP)
Ages 18 to 40
Contact the trial teamRegistry collecting health information on people with rare diseases
NCT01793168 · ClinicalTrials.gov
Countries: United States
- Sioux Falls, United States – Sanford Health
No age limit given in the registry
Contact the trial teamTests CTI-1601 long term in people with Friedreich's ataxia
NCT06447025 · ClinicalTrials.gov
Countries: United States
- Chevy Chase, United States – Uncommon Cures
- Columbus, United States – Ohio State University Wexner Medical Center
- Eatontown, United States – Clinilabs Drug Development, Corp.
Ages 2 to 60
Contact the trial teamGV101 Compared With Placebo in Friedreich's Ataxia
NCT07870590 · ClinicalTrials.gov
Countries: United States
- Eatontown, United States – CLINiLABS
Ages 16 to 40
Contact the trial teamTests nomlabofusp against placebo in people with Friedreich's ataxia
NCT07778836 · ClinicalTrials.gov
Countries: United States
- Chicago, United States – Northwestern Medical Group, Department of Neurology
- Dallas, United States – University of Texas Southwestern Medical Center
- Eatontown, United States – CLINiLABS
Ages 12 to 40
Contact the trial teamStudying Heart and Muscle Measures in People With Friedreich's Ataxia
NCT02497534 · ClinicalTrials.gov
Countries: United States
- Gainesville, United States – University of Florida
Ages 6 to 70
Contact the trial teamGene Therapy Tested for Heart Disease in Friedreich Ataxia
NCT05302271 · ClinicalTrials.gov
Countries: United States
- New York, United States – Weill Cornell Medicine
Ages 12 to 50
Contact the trial teamAerobic Exercise and Fatigue in People With Friedreich's Ataxia
NCT07444333 · ClinicalTrials.gov
Countries: United States
- New York, United States – Columbia University Irving Medical Center
No age limit given in the registry
Contact the trial teamGene Therapy LX2006 Tested in Friedreich Ataxia Heart Disease
NCT07721025 · ClinicalTrials.gov
Countries: United States
- Tampa, United States – University of South Florida
Age 6 and over
Contact the trial teamStudies the heart in people with Friedreich's ataxia
NCT02316314 · ClinicalTrials.gov
Countries: United States
- New York, United States – Weill Cornell Medicine
Ages 12 to 50
Contact the trial teamTracks health of pregnant or breastfeeding people taking omaveloxolone for Friedreich ataxia
NCT06628687 · ClinicalTrials.gov
Countries: United States
- Morrisville, United States – Evidera
Age 16 and over
Contact the trial teamBrain scans measuring GABA and glutathione in children and teens with Friedreich's ataxia
NCT07635030 · ClinicalTrials.gov
Countries: United States
- Philadelphia, United States – The Children's Hospital Of Philadelphia
Ages 8 to 16
Contact the trial teamTests DT-216P2 safety and dosing in people with Friedreich's ataxia
NCT06874010 · ClinicalTrials.gov
Countries: Australia
- East Melbourne, Australia – Doherty Clinical Trials
- Melbourne, Australia – Nucleus Network
- Sydney, Australia – Scientia Clinical Research Ltd
Ages 18 to 65
The registry has not updated this record for a long time. Ask the team whether it is still open.
Contact the trial team
How to get into an early trial
- A lab does not treat patients, so you cannot phone the lab to get a new treatment.
- Ask your doctor to look at phase 1 trials with you. These are the first tests in people.
- If one fits, your doctor sends a referral to the trial centre.
- The trial team checks whether you can join and decides.
Trial data: ClinicalTrials.gov, courtesy of the U.S. National Library of Medicine; it does not endorse this site. EU trials: EU Clinical Trials Information System (CTIS), European Medicines Agency. We show the registry records; the trial team has the last word on who can join.
Latest research
The five newest articles. The label comes from the PubMed index: whether it was tested in people, in animals or only in the lab.
- ReviewMetabolic dysfunction in Friedreich ataxia.Open Biol · 2026-11-04
- Blood-Based Lipid Peroxidation and Ferroptosis-Related Markers in Friedreich's Ataxia.Mov Disord · 2026-11-09
- Axial Function Reflects Global Severity in Inherited Ataxias: The Upright Stability Score in Ambulatory Friedreich vs. Spinocerebellar Ataxia.Ann Clin Transl Neurol · 2026-11-04
- ReviewOculomotor Phenomenology in Cerebellar Ataxias: A Video-Illustrated Practical Diagnostic Approach.Mov Disord Clin Pract · 2026-11-04
- Provider Perspectives on Friedreich Ataxia: A Cross-Sectional Survey to Assess Disease Familiarity and Decision-Making in the US.Degener Neurol Neuromuscul Dis · 2026-10-24
Is it true?
Saw something on social media? Fact-check it now.
Offer tissue or data
You can help research move faster.
Give tissue or blood to research
Before an operation or a blood test, ask if left-over tissue or blood can go to a biobank.
- Does this hospital have a biobank?
- What will the sample be used for, and for how long?
- Can I change my mind later?
Share your health data
Ask your doctor whether there is a patient registry for your illness. You choose what you share.
Take part as a healthy volunteer
Some studies need people without the illness, often family members.
Volunteer studiesGet support
Patient groups in Austria
- Friedreich Ataxie Austria (FAU)
Self-help group connecting people with Friedreich ataxia and their relatives across Austria, offering information, exchange and support.
Help for every illness in Austria (4)
- 1450 – Rund-um-die-Uhr-Gesundheitsberatung
Austria's nationwide 24/7 telephone health advice line: trained staff assess symptoms and guide callers to the appropriate care.
- Telefonseelsorge Österreich – Notruf 142
Free, confidential 24/7 emotional support and crisis line for anyone in Austria, reachable on 142.
- Gesundheitsportal Österreich (gesundheit.gv.at)
Austria's official public health portal, offering quality-assured information on diseases, prevention, health services and patient rights.
- ARGE Selbsthilfe Österreich
ARGE Selbsthilfe Österreich represents the interests of self-help groups and patient organisations in Austrian social and health policy.
Available abroad: international groups (6)
- National Ataxia Foundation
US nonprofit empowering people affected by ataxia, including Friedreich's ataxia, with education, support groups and research.
- Euro-Ataxia
European federation of national ataxia associations (incl. Friedreich ataxia): shares information on care and research progress.
- EURORDIS – Rare Diseases Europe
Alliance of over 1,000 rare disease patient organisations, with a list of rare disease helplines by country.
- Friedreich's Ataxia Research Alliance
FA patient organisation (US-based, international research reach): FA information, newly-diagnosed guide, clinical trial finder, community events, research funding.
- European Patients' Forum (EPF)
Umbrella of European patient organisations and national patient coalitions.
- International Alliance of Patients' Organizations
Global alliance of patient organisations of all diseases, promoting patient-centred healthcare.
Money and work
If the illness stops you working, ask the hospital social worker which benefits you can claim.
- Which sick-pay or disability benefits can I apply for?
- Is there help for the carer in the family?
- Are travel costs to treatment paid back?
After a loss
If someone you love has died, you do not have to go through it alone. Many families ask themselves whether they missed something; the care team can talk this through with you.
We have no grief support group in Austria in our list yet. The hospital's social worker or palliative team can tell you where to find one.
Hospitals and hospices have chaplains and counsellors, for any faith or none.
Some families decide to give tissue to research after death, so that the illness can be studied. If you want to, ask the treating hospital early whether it has such a programme.
Access and cost
- If no trial fits, your doctor can ask the company and the medicines authority whether early access (compassionate use) is possible.
- In Austria the medicines agency BASG lists the early-access programmes that are running. BASG (Austria): list of compassionate use programmes, no. 054
- In the EU you may get planned care in another EU country. Ask your health insurer before you go. Your Europe: planned medical treatment abroad
Don't pay for this
No one will cure you through a Facebook message or ask you to invest money.
- Animal worm medicines bought online (ivermectin, fenbendazole)
They are made for animals and not tested for cancer in people. High doses can cause seizures or coma, fenbendazole has caused liver damage, they may weaken your cancer treatment, and they can keep you out of a trial.
American Cancer Society: What to Know About Ivermectin (21 May 2026) · American Cancer Society: What to Know About Fenbendazole (21 Oct 2025) · ASCO: Oncologists urged to discuss ivermectin and fenbendazole (17 Jun 2026)
- “Treatment plans” offered in comments
Ask which published study in people is behind it. Usually there is none.
- Anyone who answers your post with a private treatment
Real trials are listed in a public registry. Check the number on ClinicalTrials.gov or the EU trial register.
- Strangers offering investments or “funds” for treatment
Do not reply and do not send money. Report the comment or message.
Before you pay for anything, ask three things
- Can I have a written price, with everything that is included?
- Which published study in people shows it helps my disease?
- What does my doctor say about it?
Questions for your doctor
Ready lists for a new diagnosis, during treatment, before a trial and before you pay. Open the question lists
Not medical advice. We show what is open and what is known; your care team decides what fits you.