Links

 

Over the years, Funny Blood has come across many amazing organisations that support people living life with bleeding disorders. However, PFDs are very rare and information still remains limited. We hope to keep adding to the list of information and links and invite you to Contact us if come across useful details you think might help others.

For now, we’d like to share the following information with you and hope you find it helpful :

 

Funny Blood Family

 

A number of people and organisations have become part of the extended Funny Blood ‘Family’ including our Advisors and Groups, who work really hard to help us achieve our aims. We’re also proud to work with a rather talented Author, Fashion Photographer and Fundraisers! More details coming soon about the work we do together. For now, a quick introduction to our associated Groups :

 

Haemnet : is a registered charity that brings together and gives a voice to haemophilia nurses, physiotherapists and allied health care professionals, providing forums for collaborative research, educational activities and support.

SixVibe : is the online community for young people with bleeding disorders. SixVibe is here to help people help each other by sharing experience and tips. It is a social network, an information source and a fun place to hang out.

 

Helpful links

 

World Federation of Haemophilia : is an International organisation committed to improving treatment can care for individuals with Haemophilia and other blood conditions. There’s a lot if useful information especially the Passport system which provides contact details for Centres Worldwide, allowing families living with the condition to travel and holiday safely.

United Kingdom Haemophilia Centre Doctors Organisation : also have a list of centre contacts within the UK, very useful if you’re planning on travelling around the UK.

The Haemophilia Society : is a UK wide charity that supports people with Haemophilia.

The NHS Blood and Transplant service : collect platelets at 24 Centres across England. They are processed, tested and issued to hospitals to treat patients unable to make enough platelets in their bone marrow. These are often patients with leukaemia or other cancers who may have too few platelets as the result of their disease or treatment. Or patients who need a platelet transfusion after major surgery or extensive injury and blood loss. Their leaflet on Platelet Transfusion can be viewed here.

Haemophilia Scotland : Haemophilia Scotland is a registered charity (No. SC044298) based in Scotland for people who have haemophilia, von Willebrands and other bleeding disorders. We work with them to help support families living with rare blood conditions.

ITP Association : founded by Shirley Watson, another Mum on a Mission, we often signpost supporters to this website for details of ITP. They are an independent UK registered charity which aims to promote and improve the general welfare of people with Immune Thrombocytopenia (formerly known as Idiopathic Thrombocytopenic Purpura) by providing support and information to patients, their families, and health professionals.

Contact a Familya charity for families of disabled children. CaF are the only national charity that exists to support the families of disabled children whatever their condition or disability. They provide information, advice and support. They bring families together so they can support each other and campaign to improve their circumstances, and for their right to be included and equal in society.

Family Fund : are the UK’s largest provider of grants to low-income families raising disabled and seriously ill children and young people. They help ease the additional pressures families face by helping with essential items such as washing machines, fridges and clothing but can also consider grants for sensory toys, computers and much needed family breaks together.

Merlin’s Magic Wand : believe in putting the magic back into the childhoods of seriously ill, disabled and disadvantaged children. They support families by arranging days out together.

Roald Dahl’s Marvellous Children’s Charity : helps to make life better for seriously ill children in the UK. They believe every child has the right to a more marvellous life, no matter how ill they are, or how short their life may be.

NHS Orthotic Services : they can help by sourcing safety helmets and knee, elbow and shin guards etc. An appointment can be made by first gaining a referral from your GP.

Thudguard : if safety helmets are your choice, then Thudguard make and distribute Worldwide.

Local parent groups, like WPCC and New Hope in the Worcestershire area, might be able to help with respite care and days out for you and your family too. Check out your local CAB or Library for details.

 

Further information

 

http://www.froedtert.com/benign-hematology/conditions/bleeding-disorders

http://www.hemophilia.ca/en/bleeding-disorders/platelet-function-disorders/

http://emedicine.medscape.com/article/201722-overview

the haemophilia society
Idiopathic Thrombocytopenic Purpura
contact a family
family fund
merlins magic wand