Neurogenic weakness with Ataxia and Retinitis Pigmentosa (NARP)

Summary

Type of DNA affected

Mitochondrial

Common genetic change

m.8993T>G

Typical age of onset

Childhood

Body area impacted

Nervous system

Summary

Type of DNA affected

Mitochondrial

Common genetic change

m.8993T>G

Typical age of onset

Childhood

Body area impacted

Nervous system

Summary

Type of DNA affected
Mitochondrial

Common genetic change
m.8993T>G

Age of onset
Childhood

Body area impacted
Nervous system

Prefer to listen?

Hear this information on our Audio Learning Channel.

About NARP

Neurogenic weakness with Ataxia and Retinitis Pigmentosa, also known as NARP, is a rare inherited genetic condition. It is one of at least 350 known types of mitochondrial disease (mito).

Mito affects the mitochondria, which are tiny parts inside our cells that help make the energy our bodies need. When mitochondria do not work as they should, some parts of the body may not have enough energy to work properly. . In NARP the brain and the nervous system (encephalo-) are commonly affected, as well as muscles (myopathy).¹

The onset of NARP often occurs in the first few months or years of life. But it can start later, even in the teenage years or as an adult.²

Curious about mito?

For more information visit our Understanding mito page. You’ll find explanations about what mito is, its symptoms, its causes, and how it affects the body.

Pronunciation

Neuropathy (nyoo-ROP-uh-thee), ataxia (uh-TAK-see-uh), retinitis (ret-in-EYE-tis) pigmentosa (pig-men-TOH-suh ) syndrome.

NARP (N-arp)

Other names for NARP.

NARP syndrome
Neurogenic muscle weakness-ataxia-retinitis pigmentosa syndrome
Neuropathy ataxia retinitis pigmentosa syndrome
Neuropathy, ataxia, and retinitis pigmentosa
Neuropathy-ataxia-retinitis pigmentosa syndrome

NARP may also be called NARP syndrome. Both terms refer to the same condition. Sometimes, "syndrome" is added to highlight the group of symptoms that can affect different parts of the body.

NARP may also be referred to as:

Mitochondrial disease
Primary Mitochondrial Disease (PMD)
Mitochondrial cytopathy

Planning for urgent care

If your mito specialist thinks you may get unwell quickly, they may give you an emergency plan. If you do not have a mito specialist, you could ask the specialist you see who knows about mito.

An emergency plan lists your diagnosis and care information from your care team. It can help to keep a copy with you. This could be on paper, on your phone or saved where you or your carer can find it fast. You can show the plan if you go to hospital, need an ambulance or see a new health professional. It can also help to keep current contact details for your main care team. This may include your general practitioner (GP), mito specialist or other specialist. You can also list other health professionals who know you well.

The Australian Patient Care Standards for mito and Important information about medicines can also help guide health professionals who are less familiar with mito.

Access the Australian Care standards for mito

Access important information about medicines

Hi. We’re Harrison and Noah.

"We have a rare mitochondrial condition, but it doesn’t define us. We learn and grow in different ways. Noah uses a wheelchair and communication tools, and he’s full of cheek and determination. Harrison goes to mainstream school and loves to make people laugh. We’re proud of what we’ve achieved and grateful for the people who support us."

Beyond the basics

Learn more and find support to help you navigate your journey with mito.

Milestones Prevalence Symptoms Causes Diagnosis Care team Health care Clinical studies More to read Support groups

Milestones

1990 – First genetic change linked to NARP found

Dr Holt and his colleagues first discovered NARP. They studied a family with various symptoms, helping identify NARP as a genetic condition. They found that NARP is caused by a change in the mitochondrial DNA and is passed down from the mother.^2–4

1992 – NARP linked to Leigh syndrome

The same genetic change found in NARP was also found in some people with Leigh syndrome. This showed that the two conditions are connected.⁵

2000s – More genetic changes found in MT-ATP6

Researchers found other changes in the MT-ATP6 gene that can also cause NARP. Some were very rare or had not been seen before.^1,6,7

2009 - How NARP varies

Scientists found that the genetic change that causes NARP can show up in different amounts in blood and muscle. This helps explain why the condition can vary even within the same person.⁸

2010s – New discoveries expanded what we know about NARP

Scientists found more genetic changes. They also saw that NARP can sometimes affect other parts of the body, like the kidneys. New tests, such as eye checks and brain scans, helped doctors better understand and diagnose NARP.^9,10

Prevalence

Symptoms

NARP can look different in each person. Some people may have mild symptoms, while others are more affected.

The symptoms depend on how many of the body’s cells carry the gene change, and the level of gene change in the body. People with a high level of the gene change may develop Leigh syndrome.

Early onset symptoms may be:

Muscle weakness (hypotonia)

Muscles may feel floppy or weak. This can make it harder to move or hold up the body. It can also make it hard to eat or swallow. In NARP, this weakness often affects the legs more than the arms.

Lack of muscle control (ataxia)

Ataxia means problems with balance and movement. It happens when the part of the brain that controls movement doesn’t work well. It can cause clumsiness and trouble doing quick or smooth movements.

Sensory neuropathy

This means that the nerves responsible for sensing touch, pain, or temperature do not work properly. It can cause numbness, tingling, or burning pain – usually in the hands or feet.

Vision impairment

NARP can affect the eyes and areas of the brain that control sight. Vision may get worse over time. This might include:

Tiny dark and light spots in the retina ("salt and pepper" appearance)
Retinitis pigmentosa – vision loss that starts with night or side vision
Pupils that react slowly to light
Uncontrolled eye movements (nystagmus)
Weak or stiff eye muscles (ophthalmoplegia)
Trouble seeing in the dark (night blindness)
Blind spots or tunnel vision.

Developmental delay or regression

Some children with NARP may take longer to learn new skills, such as sitting or walking. Others may lose skills they have already learned. For example, a child might start walking but later stop being able to.

Loss of thinking or memory skills (dementia)

Some people with NARP may have memory loss, confusion, or problems thinking clearly.

Other possible symptoms:

Short height
Seizures
Damage to nerves in the brain and spine
Depression or low mood
Breathing problems during sleep (sleep apnoea)
Hearing loss
Irregular heartbeat
Diabetes

This section combines information from trusted sources.^2,4,8,11,12 The explanations have been adapted into plain language by Mito Foundation to support understanding within the mito community.

For more information

Understand the signs and symptoms of mito

Causes

NARP is a genetic condition caused by changes in mitochondrial DNA (mtDNA). This DNA is passed down from mother to child.¹¹ Usually, if someone has NARP, their mother carries the gene change, but she might not have any symptoms. Men with this change do not pass it on to their children.^13,14 Sometimes, the gene change happens for the first time in a person. This is called a new or de novo change.

What happens in the body?

Our bodies need energy to do everything, walking, thinking, growing, and even sleeping. This energy is made by tiny parts inside our cells called mitochondria. Mitochondria are like mini power stations. They take food and oxygen and turn them into energy using a process that involves special proteins called enzymes.

When there’s a change in a gene that affects this process, the mitochondria can’t make enough energy. Cells then get damaged or die. This can affect many parts of the body, depending on which cells are affected.

The respiratory chain

The respiratory chain is the part of the mitochondria that makes energy. It has five main parts, called Complex I to V. These parts pass tiny particles called electrons along a chain to help make energy. The final product is a molecule called ATP, which stores and carries energy in our cells.

The respiratory chain. This image shows a simple diagram of the respiratory chain. It has four parts (labelled I, II, III, and IV) and a fifth part called ATP synthase (V). These parts work together to make energy for our cells.

You can learn more by watching the Electron Transport Chain Explained.

If any part of the chain doesn’t work as it should, the body can’t make enough energy.

In NARP, a genetic change that is most often involved is called MT-ATP6. It helps make a protein in complex V (ATP synthase), which is the last step in making energy.¹⁵ When this protein doesn’t work properly, mitochondria can’t produce enough energy. Cells get damaged or die, which causes symptoms of NARP.¹⁶

The gene most often involved is called MT-ATP6. The most common change is where one building block of DNA called thymine (T) is replaced by guanine (G) at a specific spot (called m.8993T>G). Another common change is m.8993T>C.^2,17

Explanation of the common mtDNA genetic change for NARP. The most common genetic change that causes NARP is found in the mtDNA genome (m), affecting a specific point in the MT-ATP6 gene (.8993), with the sequence of letters changed from T to G (T>G).

Inside cells, there can be a mix of healthy and changed mitochondria, called heteroplasmy. If most mitochondria are healthy, a person usually has no symptoms. If many are changed, symptoms appear. If almost all are changed, a more severe condition called Leigh syndrome can develop.²

Other genetic changes are:

MT-ATP6 gene:

9185T>C
9127delAT
9032T>C
8993T>C
8989G>C
8858G>A
8839G>C
8729G>A
8618insT

Gene list adapted from Nesti et al. (2024) and Zeviani et al. (2021).^11,18

Genetic carriers

If a mother carries the gene change but doesn’t have symptoms, she is a genetic carrier. All her children may inherit the condition, but the severity of NARP in each child can vary. It is challenging to predict who will develop symptoms or how severe they will be. Testing for NARP before birth is complicated because of how mitochondrial DNA is passed from mother to child.

Learn more about your options for building your family.

For more information

Learn more about genetics and mito

Information to understand your diagnosis

Information to understand your child’s diagnosis

Diagnosis

A diagnosis of NARP is based on your medical history, signs and symptoms, a physical exam, and other tests.

Physical exam

During a physical exam, the doctor will look for signs of NARP. This may include:

Muscle weakness (hypotonia)
Uncontrolled or stiff movements (dystonia)
Trouble with balance or coordination (ataxia)
Feeding or swallowing difficulties (dysphagia)
Breathing problems
Vision or hearing problems
For children, how they are growing and developing.

Your doctor may order other tests to help confirm the diagnosis. These can include:

Blood and urine tests – to check for high levels of lactate and pyruvate. These may be higher after exercise and can suggest NARP or Leigh syndrome.
Brain scans – such as Magnetic Resonance Imaging (MRI) and/or Computed Tomography (CT) to look for changes in the brain linked to NARP. Magnetic Resonance Spectroscopy (MRS) may be used to detect lactate in the brain.
Electroencephalogram (EEG) – records brain activity to check for seizures.
Heart tests – such as an electrocardiogram (ECG) to check heart rhythm, or an echocardiogram (echo) to assess the heart muscle.
Muscle biopsy – a small muscle sample may be taken, but muscle biopsies often don’t show clear signs of NARP because detecting complex V activity is difficult.
Nerve and muscle tests (nerve conduction study or Electromyography (EMG) ) – to assess how well nerves and muscles are working.
Eye test – to check vision. These may include:
- Visual acuity (sharpness of vision)
- Visual field (side vision)
- Colour vision tests to assess for colour blindness
- Electroretinogram (ERG) – to check retina function

Genetic testing

If NARP is suspected, your doctor will arrange genetic testing. This is usually done using a blood or saliva sample.

Genetic testing is highly specialised, and it may take up to three to four months to receive the results. Genetic counselling is important to discuss what these results mean for you and your family.

For more information

Learn more about genetics and mito

Care team

If you or your child has NARP, you will likely need care from a team of health professionals. Each specialist plays a role in helping manage different parts of the condition.

Here are some of the health professionals you may see:

General Practitioner (GP): your main point of contact. They can help with referrals, and tests, and coordinate your care.
Paediatrician: Manages overall health and coordinates care for children with NARP.
Neurologist: specialises in nervous system disorders. Manages seizures and other movement disorders.
Metabolic specialist: Manages energy production issues, ensuring the cells get the energy they need to function.
Cardiologist: to monitor and treat heart issues, like cardiomyopathy.
Gastroenterologist: Addresses digestive problems, including feeding difficulties and gastrointestinal symptoms.
Respiratory physician: Manages respiratory issues and breathing difficulties.
Endocrinologist: Manages metabolic or endocrine abnormalities, such as diabetes.
Nephrologist: Manages renal abnormalities, such as kidney failure.
Audiologist: to manage hearing loss.
Dietitian: Provides nutritional support and helps with feeding plans.
Physiotherapist: to help maintain muscle strength and mobility.
Genetic Counsellor: provides education and support for people with genetic health conditions.
Speech Therapist: to help improve issues with speech or swallowing.
Occupational Therapist: assists with daily living activities and maintaining quality of life
Mental health professional: offers mental health and wellbeing support

For more information

Information to build your care team

Information to build your child’s care team

Health care

For most people with mito, regular tests are important. These tests help monitor how mito is affecting you or your child.

The following recommendations have been adapted from the Australian Patient Care Standards for mito:¹⁹

Watching for serious illness (Critical care)

If you or your child becomes sick, symptoms of NARP may worsen. This can happen quickly, especially with viral infections like the flu or a cold.² Closely monitor for any changes and speak to your healthcare team for more guidance.

Sometimes, your health professionals may check the level of lactic acid (called lactate) in the blood. This can help guide treatment. High lactate levels can be harmful if not found early. By checking this, your healthcare team can act quickly and may help prevent more serious illness.

Medicines to be used with caution

Some medications may affect you or your child differently depending on your genetic cause of mito. Because of this, they are often avoided unless absolutely necessary.

If you or your child has optic atrophy, vigabatrin may make symptoms worse, so it is used with caution.

Some medicines that affect muscle function, such as statins, corticosteroids, metformin, or certain antiretrovirals, may worsen symptoms. Side effects could include changes in movement, thinking, breathing, eating, or digestion. These risks can be managed through monitoring and regular discussions with your health care team.

Brain and nerve care (Neurology)

Seeing a neurologist or a specialist in brain and nerve conditions can help track changes in thinking, movement, or seizures over time. For children, growth and development may also be monitored.

Sometimes, headaches in children show up as behaviour changes, like increased irritability, especially in those with learning difficulties. Conditions such as autism or attention issues may also occur and are generally supported with standard approaches.

Fatigue can have many causes. It might be linked to the heart, thyroid, or adrenal glands, low iron, weak muscles, poor nutrition, sleep, or breathing problems. Working with your health care team to identify the cause can help improve energy levels.

Mobility aids such as scooters or wheelchairs can support daily activities. At school, supports like rest breaks or using a keyboard may help with learning and wellbeing.

Breathing care (Pulmonology)

Breathing, swallowing, and sleep may be checked regularly. This can help pick up early signs of problems such as sleep apnea or choking.

Tests such as lung function or overnight oxygen monitoring may be used to check if breathing muscles are affected. If there are concerns, your health care team may refer you to a paediatric respiratory physician.

Hearing care (Audiology)

If your or your child’s hearing is affected, testing every two years or more often if recommended, may help track any changes. An ear, nose and throat (ENT) specialist might be involved in your care.

If regular hearing tests are not possible, health professionals can use other testing methods. It can also help to rule out issues like ear infections.

Speech therapy may support children with hearing loss to build language skills. Avoiding loud environments might help protect hearing.

If hearing loss is moderate to severe, hearing aids may be considered. In cases of profound hearing loss, a cochlear implant may be an option. These choices can be discussed with your health care team.

Digestive care (Gastroenterology)

You or your child’s weight, height, and BMI (body mass index) may be monitored over time.

Symptoms such as nausea, feeling full quickly, bloating, or constipation are common and may need more investigation if they continue.

If swallowing is a concern or if there is a risk of choking, a speech pathologist or gastroenterologist may help assess and manage this. Your health care team can help coordinate these referrals.

Heart care (Cardiology)

Early assessments might include an ECG, 24-hour heart monitor, or an echocardiogram. These tests may be repeated depending on individual needs and family history.

Yearly ECGs are often recommended. If anything unusual is found, your health care team may refer you or your child to a paediatric cardiologist.

Physical activity is usually encouraged, but it is important that any exercise is planned with health professionals who understand mito.

Growth and hormone care (Endocrinology)

Monitoring height, weight, and growth rate can help track development. A dietitian may also support nutrition and meal planning.

If diabetes is part of your or your child’s care, your healthcare team might check HbA1c levels (a measure of blood sugar over time). A paediatric endocrinologist may also be involved.

Kidney care (Nephrology)

Blood tests and ultrasounds may be used to check kidney growth and function. These may be done every year or two depending on what is needed.

If there are signs of kidney problems, your healthcare team may involve a paediatric nephrologist.

Bone health and electrolyte balance may also be checked, especially if you or your child have complex needs. Feeding tubes such as a gastrostomy tube may be suggested to support nutrition and growth if eating becomes difficult.

Food and nutritional care (Dihasetetics)

A dietitian may help support nutrition through meal planning or other approaches. If swallowing is difficult, feeding tubes may be considered as part of a broader care plan in discussion with your health care team.

Looking after your mental health (Psychology)

Looking after your and your child’s mental health is an important part of care. Support might focus on things like anxiety, low self-esteem, or adjusting to change. This support may come from psychologists, counsellors, or school-based services, depending on what is available and what your health care team recommends.

Vaccines (Immunology)

Most routine vaccines, including the yearly flu shot, are usually recommended. If you have concerns about vaccines, it can help to talk with your health care team or a trusted health professional.

Getting the right support (Care coordination and social work)

Health care can look different depending on the hospital or service. In larger hospitals, a team of specialists often works together to support care.

Social workers can help coordinate services, connect you with support at home, and help you find what is available.

Genetic counselling and care coordination can also be helpful, especially if you have questions about family planning or your child’s changing needs.

For more information

Access the Patient Care Standards for Mito

Clinical studies

Mito Foundation provides information to help people affected by mito understand clinical trials and how to find opportunities that may be relevant to them.

Clinical trials help researchers test new ways to prevent, diagnose, treat and manage mito. Some trials test whether a treatment is safe and whether it may help people.
Other clinical studies may look at symptoms, diagnosis, genetics, quality of life, or how mito affects people over time.
Clinical trials are carefully planned. The therapies being studied may be at different stages. Trials may not be available for every type of mito, and not every trial will be right for you. Some trials are only open to people with a confirmed genetic diagnosis, specific symptoms, a certain age range, or the ability to attend study appointments.

Mito Foundation’s emerging therapies information explains therapies in development, how clinical trials work, and what you may wish to consider before taking part. You can also use the Therapy Finder to explore therapies in development and see what may be relevant to you.

Learn more about taking part in clinical trials
Use the Therapy Finder

Staying informed

One way to hear about opportunities to take part in clinical trials is to join the Mito Registry.

The Mito Registry helps connect people with research opportunities that may be relevant to them. It also helps Mito Foundation understand how many people in Australia are affected by different types of mito.

This information can help support future research, services and advocacy.

Join the Mito Registry

More to read

Support groups

Mito Foundation support services

Helpline

Call Helpine for general advice, assistance in seeking a referral or more information on Mito Foundation support services.

Contact Helpline

Events

Mito Foundation events bring together people impacted by mitochondrial disease (mito).

Learn more about events

NDIS support

Access the NDIS Navigation Service (NNS) for resources, education and 1:1 guidance on the NDIS.

Learn more about NNS

References

Finsterer J. Neuropathy, Ataxia, and Retinitis Pigmentosa Syndrome. J Clin Neuromuscul Dis [Internet]. 2023 Mar [cited 2025 May 29];24(3):140. Available from: https://journals.lww.com/jcnmd/abstract/2023/03000/neuropathy,_ataxia,_and_retinitis_pigmentosa.3.aspx
Finsterer J. Neuropathy, Ataxia, and Retinitis Pigmentosa Syndrome. J Clin Neuromuscul Dis [Internet]. 2023 Mar 1;24(3):140–6. Available from: https://pubmed.ncbi.nlm.nih.gov/36809201/
Holt IJ, Harding AE, Petty RK, Morgan-Hughes JA. A new mitochondrial disease associated with mitochondrial DNA heteroplasmy. Am J Hum Genet [Internet]. 1990 Mar;46(3):428–33. Available from: https://pubmed.ncbi.nlm.nih.gov/2137962/
Neuropathy, Ataxia, and Retinitis Pigmentosa; NARP [Internet]. Online Mendelian Inheritance in Man (OMIM). [cited 2024 Sep 18]. Available from: https://www.omim.org/entry/551500
Tatuch Y, Christodoulou J, Feigenbaum A, Clarke JT, Wherret J, Smith C, et al. Heteroplasmic mtDNA mutation (T----G) at 8993 can cause Leigh disease when the percentage of abnormal mtDNA is high. Am J Hum Genet [Internet]. 1992 Apr [cited 2025 Jul 7];50(4):852–8. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1682643/
Angelini C. NARP (Neuropathy, Ataxia, Retinitis Pigmentosa). In: Angelini C, editor. Genetic Neuromuscular Disorders: A Case-Based Approach [Internet]. Cham: Springer International Publishing; 2014 [cited 2025 May 29]. p. 255–7. Available from: https://doi.org/10.1007/978-3-319-07500-6_58
Kerrison JB, Biousse V, Newman NJ. Retinopathy of NARP syndrome. Arch Ophthalmol Chic Ill 1960 [Internet]. 2000 Feb;118(2):298–9. Available from: https://pubmed.ncbi.nlm.nih.gov/10676807/
López-Gallardo E, Solano A, Herrero-Martín MD, Martínez-Romero I, Castaño-Pérez MD, Andreu AL, et al. NARP syndrome in a patient harbouring an insertion in the MT-ATP6 gene that results in a truncated protein. J Med Genet [Internet]. 2009 Jan;46(1):64–7. Available from: https://pubmed.ncbi.nlm.nih.gov/19124644/
Rabinovich M, Zambrowski ,Olivia, Miere ,Alexandra, Bhouri ,Rakia, and Souied E. Neuropathy, ataxia, retinitis pigmentosa: a case of a mother and two siblings. Ophthalmic Genet [Internet]. 2024 Mar 3 [cited 2025 May 29];45(2):193–200. Available from: https://doi.org/10.1080/13816810.2023.2253905
Mordel P, Schaeffer S, Dupas Q, Laville MA, Gérard M, Chapon F, et al. A 2 bp deletion in the mitochondrial ATP 6 gene responsible for the NARP (neuropathy, ataxia, and retinitis pigmentosa) syndrome. Biochem Biophys Res Commun [Internet]. 2017 Dec 9 [cited 2025 May 29];494(1):133–7. Available from: https://www.sciencedirect.com/science/article/pii/S0006291X17320442
Zeviani M, Carelli V. Mitochondrial Retinopathies. Int J Mol Sci [Internet]. 2021 Dec 25;23(1):210. Available from: https://pubmed.ncbi.nlm.nih.gov/35008635/
Koenig MK, Grant L. Chapter 9 - Neuropathy, Ataxia, and Retinitis Pigmentosa. In: Saneto RP, Parikh S, Cohen BH, editors. Mitochondrial Case Studies [Internet]. Boston: Academic Press; 2016 [cited 2025 May 29]. p. 69–73. Available from: https://www.sciencedirect.com/science/article/pii/B9780128008775000097
Kara B, Arıkan M, Maraş H, Abacı N, Cakıris A, Ustek D. Whole mitochondrial genome analysis of a family with NARP/MILS caused by m.8993T>C mutation in the MT-ATP6 gene. Mol Genet Metab [Internet]. 2012 Nov;107(3):389–93. Available from: https://pubmed.ncbi.nlm.nih.gov/22819295/
Sallevelt SCEH. Preventing the transmission of mitochondrial diseases. 2017 [cited 2025 Mar 25]; Available from: https://cris.maastrichtuniversity.nl/files/7162664/v5582.pdf
Capiau S, Smet J, De Paepe B, Yildiz Y, Arslan M, Stevens O, et al. Clinical Heterogeneity in MT-ATP6 Pathogenic Variants: Same Genotype-Different Onset. Cells [Internet]. 2022 Jan 30;11(3):489. Available from: https://pubmed.ncbi.nlm.nih.gov/35159298
MT-ATP6 gene: MedlinePlus Genetics [Internet]. [cited 2025 May 26]. Available from: https://medlineplus.gov/genetics/gene/mt-atp6/
Ball M, Thorburn DR, Rahman S. Mitochondrial DNA-Associated Leigh Syndrome Spectrum. In: Adam MP, Feldman J, Mirzaa GM, Pagon RA, Wallace SE, Amemiya A, editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993 [cited 2025 May 26]. Available from: http://www.ncbi.nlm.nih.gov/books/NBK1173/
Orphanet: NARP syndrome [Internet]. [cited 2025 May 26]. Available from: http://www.orpha.net/en/disease/detail/644
Sue CM, Balasubramaniam S, Bratkovic D, Bonifant C, Christodoulou J, Coman D, et al. Patient care standards for primary mitochondrial disease in Australia: an Australian adaptation of the Mitochondrial Medicine Society recommendations. Intern Med J [Internet]. 2022 Jan [cited 2025 Mar 25];52(1):110–20. Available from: https://onlinelibrary.wiley.com/doi/10.1111/imj.15505

Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information’s accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.

Acknowledgement: Mito Foundation acknowledges the valuable contributions of our reviewers, we thank Professor John Christodoulou AM MB BS PhD FRACP FRCPA FHGSA for their review. As well as members of the mito community resource review panel.

Author: Mito Foundation
Version: 1
Date published: Wednesday 6 August 2025

What is NARP? Causes, symptoms and support

Summary

Type of DNA affected

Common genetic change

Typical age of onset

Body area impacted

Summary

Type of DNA affected

Common genetic change

Typical age of onset

Body area impacted

Summary

Prefer to listen?

About NARP

Curious about mito?

Pronunciation

Other names for NARP.

Planning for urgent care

Hi. We’re Harrison and Noah.

Beyond the basics

Mito Foundation support services

Helpline

Events

NDIS support

Send us feedback about this resource

1. On a scale from 0 to 5 (where 0 is very poor knowledge, and 5 is all the knowledge you feel you need), how would you rate your knowledge?

2. On a scale from 0 to 5 (where 0 is very poor confidence and 5 is all the confidence you feel you need), how would you rate your confidence?

3. On a scale from 0 to 5 (where 0 is very poor wellbeing, and 5 is what you feel your wellbeing should be), how would you rate your wellbeing?

4. On a scale from 0 to 5 (where 0 is very poor access to the services you need, and 5 is you have access to the services you feel you need), how would you rate your access to services: