My Mito
Directory
Online mito info all in one place
Medical and Miscellaneous
Our directory is aimed at saving you time searching the internet. We welcome any additions or feedback.
Please be aware that we can’t vouch for the content of the sites we find, and all descriptions are taken from those sites.
Medical
NHS Rare Mitochondrial Disorders Service Disease Information
mitochondrialdisease.nhs.uk/patient-area/disease-information
Mitochondrial diseases can be classified in a number of different ways.
Often clinicians will refer to 'mitochondrial syndromes', which are names given to a group of patients with similar symptoms and presentation of disease.
The following section gives detailed information on specific mitochondrial syndromes and has been taken directly from the Wellcome Centre for Mitochondrial Research website. It is not an exhaustive list but covers the most common syndromes.
This guidance is intended as general advice and it is important to remember that symptoms of mitochondrial disease vary hugely from person to person, even within the same mitochondrial syndrome.
NHS Rare Mitochondrial Disorders Service Care Guidelines
mitochondrialdisease.nhs.uk/professional-area/care-guidlines
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.
Euromit
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.
International Mito Patients
www.mitopatients.org/mitodisease/list-of-medicines
International Mito Patients have produced a list of medicines that should be avoided or used with caution by patients with mitochondrial disease.
Mito 2i
We bring together a network of researchers, clinicians, patients and advocates, academic institutions, NGOs and industry partners working together with a common mission - to transform our understanding of the role of mitochondria in human health and disease. We welcome you to join us!
Mitochondrial Medicine Society (MMS) (US)
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)
NHS Rare Mitochondrial Disorders Service
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
The Lily Foundation Patient Registry
www.thelilyfoundation.org.uk/find-support/UK-mito-patient-registry
The UK Mito Patient Registry (UKMPR) is a powerful tool that brings real benefits to the mito community, and gives patients a voice in research and care provision. By signing up, you will be helping the search for effective treatments and a cure for mito.
Please sign up for your personal Lily Account. Once your account has been created you will then be able to access the UK Mito Patient Registry via your personal dashboard.
Rudy Study
Rudy is a study in Rare diseases. Headed up by a research team at the University of Oxford, Rudy aims to transform clinical care for participants through patient driven research.
Miscellaneous
The Advocacy People
www.theadvocacypeople.org.uk
Healthwatch
www.healthwatch.co.uk/what-we-do
World Mitochondrial Disease Week
www.mitochondrialdiseaseweek.org
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 (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
Mito Advocate
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!
UMDF's Mito University
Mitochondrial diseases are often under-recognized and misunderstood. Mito University provides patients, families, caregivers and clinicians with the resources, facts and knowledge to better navigate this new journey.
Accessible Holidays
accessibleholidayescapes.co.uk
As a young family who love having holidays and making happy memories, we have discovered that it can often be very complicated searching out that elusive holiday spot when you have unique accessibility needs and a family of 4 to keep happy!
Our solution has been to create a multi award-winning website that is available to all holidaymakers but has the extra special element of each property clearly listing both their general features and all internal and external accessible features.
Brickhouse Farm Cottages
Our 12 outstanding cottages are set on Brickhouse Farm amongst acres of stunning countryside. The Cottages vary in size, from 2 to 5 bedrooms, and were purpose built in 2013 to provide holiday accommodation for families, friends and carers in the most tranquil surroundings of Hambleton yet only a step away from the razzle dazzle of Blackpool!
Disabled Holidays
DisabledHolidays.com is the UK's largest disability specialist travel agency, passionately committed to providing accessible holidays that exceed the needs and wishes of our disabled customers.
With the largest choice of accessible holidays in the UK and abroad plus cruise, we have something for everyone. Our easily searchable directory will enable you to find wheelchair friendly holidays and accommodation for people with limited mobility or even pet friendly properties for people with hearing or visual impairments. We also take great care in arranging holidays for people with terminal illnesses understanding the privilege and weight of responsibility that comes with providing this service to the highest standard.
Accessible accommodation is guaranteed and with flights, adapted transfers, equipment hire and more, book with DisabledHolidays.com to truly travel without limits!
Farm Stay
www.farmstay.co.uk/holidayideas/accessforall.aspx?page=1
Our Farm Stay hosts are delighted to welcome guests with disability access needs. Many of our self-catering conversions are single storey cottages and have been specifically designed for disabled guests requiring accessible holiday accommodation.
Some of our properties have been independently rated for their accessibility under the National Accessible Scheme (NAS). We are also proud to offer winning properties in the Visit England Awards for the Excellence Access For All category. In addition, some of our properties offer cross-country wheelchairs, disabled riding, and other facilities. Please contact your chosen properties for more information.
Fenetic Wellbeing
www.feneticwellbeing.com/blog/10-stunning-wheelchair-friendly-staycations-in-the-uk
The UK offer some of the best staycations there is, and more specifically the UK offers some of the finest wheelchair friendly holidays.
We have taken a deep dive into the UK staycation scene and picked out the greatest wheelchair friendly options. Whether you want to explore the rolling hills of the countryside, take a relaxing spa break, or go enjoy the best of Britain’s beaches, this list has it all.
Independent Cottages
www.independentcottages.co.uk/holiday-ideas/cottages-for-limited-mobility
Wheelchair users or those who require accessible accommodation are not restricted when it comes to choosing their self-catering holiday cottage in the UK. Lots of the cottages on our website have been adapted or, in some cases, designed and built to be wheelchair friendly while still feeling like a welcoming and comfortable home-away-from-home for everyone. Pets are welcome in many and features include ground floor living and bedroom space, wide doorways, height-adjustable sinks and stoves, furnishings that have space for hoists, and non-slip wet rooms. One of the many benefits of booking directly with owners is that you can see their access statement or speak with them before booking to make sure that a property has everything you and your party require.
Mellwaters Barn Cottages
www.mellwatersbarn.co.uk/cottages
Providing holiday cottages that are accessible for everyone is at the heart of what we do. We ensure that our disabled cottages can be enjoyed by the full family yet are easy to use for all. All of our self catering accommodations have been created differently to suit the various needs of our visitors.
From kitchens that have been adapted for wheelchair users and ceiling hoists in bathrooms to stair lifts and level entry access. We’re ready and happy to meet your needs, whatever they may be.
Westport Farm Cottages
www.westportfarmcottages.co.uk
The farm’s iconic clocktower building has been sympathetically converted into three high spec wheelchair friendly holiday cottages to provide quiet, cosy and romantic accommodation for those looking for a few indulgent days away from the hustle and bustle of city life. With views to die for, the cottages are comprehensively equipped and benefit from state of the art non-slip wetrooms and ample off-road parking.
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.
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
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.
Enable Holidays
https://www.enableholidays.com
Award-winning disabled holiday specialists providing accessible tailor-made holidays for wheelchair users with guaranteed adapted accommodation.
Limitless Travel
discover.limitlesstravel.org/uk/disabled-friendly-holidays
Group tours travelling with like minded people. Founded by disabled travellers, for disabled travellers
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.
All Clear Travel Insurance
www.allcleartravel.co.uk/medical-conditions/disability
Disability travel insurance is designed to help you travel with confidence. Our individually tailored policies provide cover for cancellations and medical expenses, even those relating to COVID-19. To enjoy a carefree trip, get a quote from AllClear today
Avanti Travel Insurance
www.avantitravelinsurance.co.uk/pre-existing-medical-conditions-travel-insurance
Ever get the feeling that some insurers are just waiting to catch you out? When we say your pre-existing medical conditions are covered by your travel insurance – they’re covered!
Go ahead, relax and embrace your next adventure, knowing we’re here 24/7 should you need a helping hand.
After extra peace of mind on your next adventure? Take a look at our Covid travel insurance.
We can cover most medical conditions. But if we can’t cover you, you may find the Money & Pensions Service directory helpful. They list specialist medical insurance providers – of which we are a listed provider. The directory can be found online, or by calling 0800 138 7777.
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.
Good To Go Insurance
www.goodtogoinsurance.com/medical-travel-insurance/disabled-travel-insurance
We know that there are an infinite number of reasons for disability and types of disability, none of which should stop you enjoying a holiday abroad. That's why we are proud to be able to offer disabled travel insurance cover for all types of disability and medical conditions.
It doesn't matter whether your disability is physical or caused by a chronic medical condition, we can provide travel insurance cover to allow you to travel with peace of mind that you have travel insurance cover in place to cover the cost of emergency medical treatment abroad.
Insure and Go
https://www.insureandgo.com/medical/disabilities/
If you have a disability and like travelling, you’ll probably know what a nuisance it is to get a holiday insurance policy to cover you. At InsureandGo, we think travel insurance should be available to as many people as possible. So if you have a disability and you’re concerned about getting covered, or you’ve had trouble in the past, we might be able to help you. One of the things that makes us proud is that we consider all medical conditions, so we may be able to help you when others haven’t.
InsuranceWith
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.
OK To Travel
www.oktotravelinsurance.co.uk/disability-travel-insurance
OK To Travel Ltd was setup to provide specialist travel insurance for travellers with pre-existing medical conditions. Any type of medical condition up to a high level of severity can be covered with single and annual multi-trip policies available for frequent travellers. We don’t impose any age restrictions on single trips up to 3 months or annual multi-trip policies and aim to cover all types of medical conditions, including cancer, heart conditions, diabetes, stroke, epilepsy and mental health conditions.
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