Helpful Resources
We provide a range of downloadable guides and leaflets for families and professionals.
We hope the below links will be useful for families living with Dravet Syndrome to find help, support and funding.
Please note that this list isn’t exhaustive. Dravet Syndrome UK does not endorse or take responsibility for products, services or advice given through third party organisations, companies and trusts.
Something we’re missing? Please email [email protected] to suggest an addition.
Advice & Support
| Matthew’s Friends | https://www.matthewsfriends.org/ | Provide advice and support with the Ketogenic Diet |
| Carers UK | https://www.carersuk.org/ | Provide advice and support for Carers |
| Slumberkins (USA) | https://slumberkins.com/blogs/slumberkins-blog/your-child-s-mental-health-how-to-know-when-it-s-time-to-reach-out-for-help?page=2 | Provide advice on when to consider a mental health check-up for your child |
| Kids | https://www.kids.org.uk/ | Provide SEND advice |
| Scope | https://www.scope.org.uk/ | Provide advice and support for disabled people |
Day Care
| The Shaw Center | https://www.theshawcentre.org.uk/ | Charity Run Day Centre in Cheetham, Manchester |
Equipment
| Love Quilts UK | https://www.lovequiltsuk.com/ | Make quilts for children under the age of 19 who have life-threatening or life-long illnesses |
| Sleep Safe | https://www.sleep-safe.co.uk/bndravetuk/ | Sell anti suffocation pillows (£10 discount per pillow for Dravet Syndrome UK families) |
| Kidz to Adults | https://www.kidzexhibitions.co.uk/ | Hold exhibitions at various locations in the UK throughout the year – with suppliers and exhibitors for resources/equipment/advice and support for disabled children and adults |
| Space Saver Beds | www.spacesaverbeds.co.uk | Sell portable space saver beds canopies, padding and seating solutions |
| Etac | www.etac.co.uk | Sell mobility equipment and aids for people living with a disability |
| Seenin | www.seenin.co.uk | Sell specialist changing mats, sleepwear, aprons/bibs, wheelchair covers, socks and gloves designed for children and adults with special needs |
| Safespace Beds | https://www.safespaces.co.uk/families | Supply and install Safespace beds |
| Jon Shaw Foundation | https://jonshawfoundation.org/about-us/ | Fund equipment – monitors, alarms and anti-suffocation pillows; Fund face to face counselling, leisure or sporting activities; Hold events for bereaved siblings and close friends. |
Experiences
| The Willow Foundation | https://www.willowfoundation.org.uk/ | Fund special days and special treats, for people living with a life-threatening or life-limiting illness (medical professional referral only) |
| Wheels for All | https://wheelsforall.org.uk/ | Provide UK wide inclusive cycling events across the UK for those living with a disability or long-term health conditions |
| Ashley’s Meadow | https://ashleysmeadow.co.uk/ | Camping in Luna Bell Tent for families and their carers in the Forest of Dean |
Grants & Funding
| Handicapped Children Action Group | http://www.hcag.org.uk/ | Fund equipment to children with a disability up the age of 16 years old |
| Family Fund | https://www.familyfund.org.uk/ | Fund equipment, holidays, clothing, bikes/trikes, activities and furniture for children and young people who are seriously ill or living with a disability |
| Make A Wish Foundation | https://www.make-a-wish.org.uk/ | Fund wishes for disabled and critically ill children |
| Newlife Charity | https://newlifecharity.co.uk/ | Fund equipment, provide support from Newlife Nurses and provide free loan of specialist toys to families who have disabled or terminally ill children |
| Independence At Home | https://independenceathome.org.uk/index.html | Fund grants towards powered wheelchairs, riser-recliner chairs and wet rooms to people of all ages who have a physical or learning disability or long term illness and who are in financial need |
| Charis | https://charisgrants.com/individuals/ | Provide support schemes for help with utility bills for people who are experiencing financial difficulties or health vulnerabilities |
| Disability Grants | https://www.disability-grants.org/ | Provide a library of various grants for disabled adults and children |
| Turn2us | https://www.turn2us.org.uk/get-support/apply-for-grants | Provides various grants, a grants search and benefits calculator |
| Children Today Charitable Trust | https://www.childrentoday.org.uk/apply-now/ | Provide specialist equipment to help offer an improved quality of life for children and young people living with a disability |
| Whizz Kidz | https://www.whizz-kidz.org.uk/ | Provide grants for wheelchairs and mobility equipment |
| Caudwell Children Charity | https://www.caudwellchildren.com/ | Provide grants, family support, equipment and sensory packs and advice sessions |
| The Elifar Foundation | https://www.elifarfoundation.org.uk/apply-for-a-grant/ | Provides wheelchairs, trikes, seats and sensory equipment for children or young adults with any form of physical or learning disability |
| Freedom for kids | https://www.ergoadaptivego.co.uk/contact-8-1 | Supports individuals and families to identify charities that may be able to help fund specialist pushchairs |
| Tree of Hope | https://www.treeofhope.org.uk/ | Crowdfunding charity, helping to raise funds for individual children and young people requiring healthcare not freely available to them |
Family Guide
An essential downloadable guide aimed at parents and carers to support their Dravet journey – it covers every aspect of living with Dravet Syndrome and its impact on family life.
Support for Families
Find out more about the support we provide to families affected by Dravet Syndrome, including our annual Center Parcs weekend, our assistance grants, and how to join us.