Associations and Charities

Helpful Narcolepsy Information 

https://www.facebook.com/groups/398524433586211/

This group was created for those who suffer from a condition called #Narcolepsy and or parents of children with Narcolepsy.

This groups purpose is to be as informational as possible, and also as resourceful as possible when giving advice, links, lists of resource, connecting people to others like them, finding others in their area, or groups and or resources that are helpful to them!

Please join! All Ages…

Rules* The only rules are;
– Be Kind, if you have nothing nice to say than please do not say anything at all

– Be appropriate, please understand this is open to all ages, so do not talk about or post something that isn’t view able by everyone thank you.

 

 

http://www.breathoflife.org.uk/

Breath of Life is a registered charity which helps people in North Staffordshire who have breathing problems or lung disease.

Since 1997 we have funded research and provided equipment and facilities to help in the treatment and rehabilitation of patients in hospital, in clinics and at home, where statutory funding was not available.

 

 

http://www.breatheon.org.uk/

Breathe On UK is a national charity supporting the families and carers of young people who are life-dependent on mechanical breathing, or long term ventilation (LTV). Such a situation is recognised as being extremely traumatic and emotionally, physically, and financially demanding. Recent research and medical estimates indicate that there are thousands of children in the UK who exist with this condition and that the number is growing every year.

The charity was founded in 2004 by Victoria Townsend, as a result of her personal experience of a son on long-term ventilation, and is dedicated to supporting these families.

 

 

Able Here
A socializing website for people with disabilities.

Contact a Family – For Families With Disabled Children
A charity to remove the barriers imposed by society which prevent families with disabled children achieving their full potential, and to empower these families to live the lives they want to lead.

Disability North
Promoting inclusion, independence and choice for disabled people.

Early Support
Improving the delivery of services for disabled children, young people and their families.

Every Disabled Child Matters
A campaign to get rights and justice for every disabled child.

Family Fund – Helping Disabled Children
The UK’s largest provider of grants to low-income families raising disabled and seriously ill children and young people.

Focus On Disability
Disability and Mobility Information, Advice and Products for Disabled People, their families and carers in the Uk

Live In Care
Live In Care enables anyone with care needs to continue living in their own home with a round-the-clock care worker.

Motability
The Motability Car Scheme enables disabled people to obtain a brand new car, simply by using their government-funded mobility allowances.

National Center on Sleep Disorders Research
Coordinating government-supported sleep research, training and education.

Radar
The disability rights people.

Rare Disease 
The National Alliance for people with rare diseases and all who support them.

Stop Discrimination Against Special Needs
Uniting the special needs community against discrimination to those of us with disability.To raise awareness,challenge negative attitudes,and to provide information, and support

The Children’s Sleep Charity
All children are supported to get a good night’s sleep and that the importance of sleep for children’s mental, emotional and physical wellbeing is valued and established across England and Wales.

The PAH Nursing Virtual Clinic
A two-part continuing educational program to enhance nurses’ foundational knowledge of – and expand their competencies in – managing patients with Pulmonary Arerial Hypertension (PAH)

Care2
Care2 believes that one person can truly make a difference. If you have a cause worth fighting for, start a petition and promote it. Sign a sponsor petition that speaks to your passions. You can also discover tips on how to better your planet, your community, and yourself.

NORD
The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

Kids with Vents
We are a support and advocacy group for parents who have a child or teen who uses a ventilator full or part time (any type, including NIPPV.) Young adults who are on a vent from a childhood disorder or injury are also welcome to join!

Disability Sanctuary
An online community for people and carers with physical, cognitive, sensory, developmental, mental & emotional disabilities and conditions. A place where you can find new friends, support and information on benefits, entitlements, difficulties and experiences you are facing. You can find health, disabled special needs and mobility services in our directory as well as join in with online events, webcasts & seminars.

CCHS Family Network
A group for parents and those who care for indivials with cch uniting them giving information, friendship and support

The Children’s Sleep Charity
Our aim is that “All children are supported to get a good night’s sleep and that the importance of sleep for children’s mental, emotional and physical well-being is valued and established across England and Wales”.

The British Sleep Society
The British Sleep Society (BSS) is a professional organisation for medical, scientific and healthcare workers dealing with sleeping disorders. We are a registered British charity and our ultimate aim is to improve public health by promoting education and research into sleep and its disorders.

 

Uk multidisciplinary sleep professionals

The Sleep Apnoea Trust Association

The Sleep Apnoea Trust Association (SATA) exists to improve the lives of sleep apnoea patients, their partners and their families. Managed entirely by volunteers, SATA is the leading UK charity working in the field of sleep apnoea. 

C pap /Sleep apnea/snoring

http://forums.cpap.co.uk/

 

Narcolepsy UK is a registered charity (No. 114434) that supports people with narcolepsy, their relatives, carers and others interested in improving the quality of life for narcoleptics. Narcolepsy is a neurological medical condition, in which the sleep/wake function in the brain is not working correctly. It is estimated that 0.05% of the worldwide population have narcolepsy (that is 1 in 2000).

Narcolepsy UK aims to:
– To promote awareness of narcolepsy and provide authoritative information about it to narcoleptics, the medical profession and the public.
– To support the establishment of local self-help groups in which narcoleptics can exchange experience and provide mutual support.
– To continue to liaise with UK government departments regarding narcolepsy as a disability.
– To encourage research into the causes and treatment of narcolepsy.
– To co-operate with narcolepsy associations overseas to further these aims.

 

The Primary Care Respiratory Society UK

http://www.pcrs-uk.org/

 

Talk About Sleep – Sleep Apnea & Snoring Forum
Learn more about Sleep Apnea and Snoring on this helpful forum.

Sleep Apnea Community Forum
Benefit from the knowledge provided by other community members and our Sleep Apnea specialists.

ASAA Forum
Sleep Apnea forums hosted by the American Sleep Apnea Association.

AOL Sleep Apnea Forum
Several forums hosted by AOL related to Sleep Apnea topics.

Yahoo Sleep Apnea Forum
A wide variety of Sleep Apnea related forums.

Sleepnet.com Forums
One of the first forums for Sleep Apnea suffers, view current or archived forum topics.

 

http://www.actfortrachykids.com

Aid For Children with Tracheostomies – ACT, is a Parent Support Group and registered charity run by people who have all dealt with tracheostomy care at some stage in life.  We aim to offer support and advice to those who come into contact with a child who has a tracheostomy.

We hope you will find the information within our website helpful. Whether you are a parent, carer, friend, relative or professional, and whether you are very new to this experience, have months or even years of experience in tracheostomy  care we are    here to help as much as we can.

 

http://www.tracheostomy.com/networking/message.htm