My Mito
Directory

Online mito info all in one place

Medical and Miscellaneous

We regularly check the directory content, but please let us know of any more we can add.

NHS Rare Mito Disorders Service

NHS Rare Mitochondrial Disorders Service

mitochondrialdisease.nhs.uk

The NHS Highly Specialised Services (HSS) for rare mitochondrial disorders provide a comprehensive high quality service for this rare group of disorders, with centres in London, Newcastle and Oxford. Each centre has international reputation for clinical care and research in Mitochondrial Disorders, and has an expert team of doctors and other healthcare professionals.

This website provides the following information:

  • Who we are
  • Services we provide
  • How patients and other healthcare professionals can access our services
  • Mitochondrial disorders information for patients and families
  • Mitochondrial disorders information for healthcare professionals
  • Information on forthcoming events
NHS Rare Mito Disorders Service

NHS Rare Mitochondrial Disorders Service Care Guidelines Aimed at Medical Professionals

mitochondrialdisease.nhs.uk/professional-area/care-guidlines

Mitochondrial diseases are an important group of inherited disorders that result in a defective mitochondrial respiratory chain.
Together they form an important group of inherited disorders, yet management of these conditions remains a poorly researched area and there is little expert advice available for the treatment of specific aspects of mitochondrial disease. Multi system involvement is also common and this can pose additional management dilemmas for doctors.

The Newcastle Mitochondrial Disease Guidelines aim to provide expert guidance to health professionals on the management of specific aspects of Mitochondrial Disease.

These guidelines have been developed using consensus expert opinion sourced from the NHS Rare Mitochondrial Disorders Service in Newcastle with associated experts from other hospitals.

NHS Rare Mito Disorders Service

NHS UK Government Rare Disease Strategy

www.gov.uk/government/collections/rare-diseases

The UK strategy for rare diseases sets out a shared vision for improving the lives of all those with rare diseases in the UK by 2020. It makes 51 commitments in a number of different areas.

Each country in the UK will take action and develop plans to implement the strategy that best meets their own health and care systems, but will work together where it makes sense to do so.

Euromit

Euromit

euromit2020.org

Euromit is the largest international conference on mitochondrial disease and attracts clinicians and scientists from across the world, all with a common goal to improve our understanding of mitochondrial disease.

Mitochondrial Medical Society

Mitochondrial Medicine Society (MMS) (US)

www.mitosoc.org/toolkit

Founded in 1998 by doctors Richard Haas and Robert Naviaux, the MMS represents an international group of physicians, researchers and clinicians working towards advancing education, research and global collaboration in clinical mitochondrial medicine.
This link takes you to the page where parent/patient/physician handouts are available (scroll to end of page)

The Charge (US)

www.thecharge.com/about

Mitochondrial disorders are so rare that few people have even heard of them. When doctors embark on a diagnosis these conditions are almost never top of mind.

That’s why we created The Charge: Whether you are a person grappling with an unfamiliar diagnosis, a caregiver seeking support or a doctor confronting a puzzling case, you need information. The Charge will give you the basics, direct you to resources you can use and connect you to the mitochondrial disease community.

Global Mito Awareness Week

Global Mitochondrial Disease Awareness Week

www.gmdaw.org
www.mitopatients.org/awareness-week

Mitochondrial Disease Awareness Week is celebrated globally to educate and increase awareness about mitochondrial disease. Awareness Week is celebrated annually during the third week of September

Light Up for Mito

Light Up for Mito (Global)

ww2.gmdaw.org/light-up-for-mito

Light Up for Mito is a global campaign hosted by International Mito Patients (IMP) involving illuminating landmarks in green to raise awareness of mito and is part of Global Mitochondrial Disease Awareness Week

Lucy's Light

Lucy’s Light (UK)

www.lucy-watts.co.uk

Lucy Watts MBE is a prominent patient advocate, disability advocate, consultant, speaker and social entrepreneur. She is committed to using her time, energy and skills to make an impact in society and to improve the lives of others. Be that delivering a TEDx talk, appearing in the media, managing projects, co-leading research, speaking internationally via video link, setting up and running patient advisory groups, sitting on various committees, or the paid work she now undertakes. Lucy’s work is rich and varied. She does all this despite living with a life-limiting and complex disability, and having lived all her prognosis or ‘expiry dates’ as she calls them, supported round the clock by nurses and carers and her Assistance Dog Molly, Lucy is living a busy, exciting and fulfilling life.

Lucy was diagnosed with mitochondrial disease in 2018, with the specific gene not as yet identified.

Mito Advocate

Mito Advocate

Facebook Link

We advocate for Mitochondrial disease! It is a chronic, progressive disorder that occurs when the mitochondria of the cell cannot produce enough energy for cell or organ function. Estimates suggest that 1 in 4,000 people will face a diagnosis of mitochondrial disease — THERE IS NO CURE! Common symptoms include poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and/or hearing loss, gastrointestinal issues, learning disabilities, and heart, liver, or kidney failure.

The Power Up for a Mito Cure online store is stocked with Mito clothing and merchandise

This community is created to be an advocate, share information and draw awareness to the rare disease—the content and graphics are for informational purposes. Additionally, the content and links are shared from online sources and makes no representation or assurance as to the accuracy of the content from other online resources. Mito advocate shares information, experiences and stories only through graphics, videos or posts—no medical advice or professional diagnosis is represented by Mito Advocate.
Mito advocate allows users the ability to share posts, graphics and associated links and disclaims any responsibility and liability of any kind in connection with the user’s use of the information contained herein.

Thank you for advocating with us!

Mito Rocks

Mito Rocks

Facebook Link

Painting and hiding rocks to raise awareness of Mitochondrial disease

My Mito Mission cannot vouch for any company or product. However, we list companies here which we understand tailor their services to meet the needs of those with mitochondrial disease and other complex conditions. As with all other My Mito directory categories, we are open to add any more qualifying entries as we become aware of them.

 

Designed4Travel

Designed 4Travel

designed4travel.co.uk/about-us/disabled-holidays

At Designed4Travel we hold disability close to our hearts with one of our family members having mitochondrial disease and we know what obstacles you face when booking a holiday for someone with special needs.

‘WE CARE ABOUT YOU’ and will take the time to find out what you want, ensuring every single aspect of your holiday is absolutely perfect. Designed4Travel will take care of everything including getting to the airport, fast track through the airport, flights, accommodation, and return transfers to the resort and even travel insurance. Then all you have to worry about is what factor sun screen you need to take.

Holidays are so important to be relaxing and stress free for anyone however vital for those with special needs therefore we know and have experienced many aspects from booking travel arrangements for disabled travellers. Designed4Travel partner with many suppliers who specialise in disabled holidays and with our commitment to ensure your holiday will create the memories of a life time and we can go that extra mile to get you ‘YOUR PERECT’ Holiday.

Designed4Travel holidays are fully protected through our bonding with ATOL to give you real peace of mind.

Disabled Holidays

Disabled Holidays

www.disabledholidays.com

We understand both the difficulties that a disabled holiday maker can face and the worry that this causes. Our job is to take away that worry by providing you with all the support you need at every step including choosing, booking, preparing to go, travelling, holidaying and coming home.

My Mito Mission cannot vouch for any company or product. However, we list companies here which we understand tailor their screening to better serve those with mitochondrial disease and other complex conditions.

As with all other My Mito directory categories, we are open to add any more qualifying entries as we become aware of them.

 

Free Spirit Insurance

Free Spirit Travel Insurance

www.freespirittravelinsurance.com/medical-conditions/rare

Free Spirit’s philosophy is that travel insurance should be available to as many people as possible, which is why we can:

  • Provide cover whatever your age;
  • Consider any medical condition and disability (including a terminal condition);
  • Include your travelling companions (even if they don’t have a medical condition).

Many standard travel insurance policies exclude cover for older people and for those with existing medical conditions. This can lead to people travelling abroad without adequate cover and risking large medical bills.

Insurancewith Logo

InsuranceWith

www.insurancewith.com

We specialise in medical travel cover. By working with charities, clinical specialists, and you – our customers – we’re always improving our understanding to create products and services to meet your needs. It’s all part of our efforts to address the issues people have when looking for specialist travel insurance.

My Mito Mission cannot vouch for third-party content and any descriptions are taken from these sources.

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