Programme overview

Why a partnership network?

It is estimated that there are between 6,000 to 8,000 genetic disorders. While individually, each of these disorders is rare, collectively they affect more than two million people in the UK including more than half a million children.

The aim of the UK Genetic Disorders Partnership Network is to create a forum for all those organisations in the UK that support and care for those affected by a genetic disorder to enable the genetic community as a whole to:

  • increase the profile of genetic disorders among the general public so that the role of genes and the impact of a change in a gene on the life of a child or adult can be better understood
  • raise more funds to support those affected by a genetic disorder
  • collaborate more closely and share best practice and learning

What are the advantages of becoming a member of the UK Genetic Disorders Partnership Network?

Members of the UK Genetic Disorders Partnership Network will be able to:

  • share in the money raised from Jeans for Genes Day through our 50/50 income share scheme
  • apply for a grant from the annual GDUK/Jeans for Genes Day grant programme
  • register for priority booking to attend the annual UK Genetic Disorders Leadership Symposium (for genetic disorder charities and patient groups only)

How do I become a member of the UK Genetic Disorders Partnership Network?

To become a member, please visit our registration page.

You will be asked to accept the terms and conditions of the Partnership Network. We have tried to make these as collaborative and simple as possible.

Once you register your details, you will be asked to send us your organisation’s logo so that we can add it to a list of members and link to your website.

Within 72 hours of registering to join the Partnership Network, your organisation’s name will appear at the bottom of the Jeans for Genes Day registration page. Your supporters can then recruit schools and workplaces to hold a Jeans for Genes Day and your organisation will receive 50% of the money they raise.

What is the 50/50 income share scheme?

To use the power of our collective voices to shout loudly and raise more money, GDUK is offering organisations who support and care for children, adults and families affected by genetic disorders, the opportunity to share the Jeans for Genes Day brand.

Jeans for Genes Day raises funds from school children and employees who wear their jeans to school and work in exchange for a small donation.

Under our 50/50 income share scheme, your organisation will be given half of the proceeds from a Jeans for Genes Day event provided the school or workplace has been encouraged to take part by one of your members.

All the school or workplace has to do is select your organisation’s name at the bottom of the Jeans for Genes Day registration page.

Here is an example of how the scheme might work.

A supporter of your organisation decides to approach their local primary or secondary school to see if they will hold a Jeans for Genes Day. Before asking for a meeting with the head or other key member of staff who organises charitable fundraising, the supporter must check that the school has not held a Jeans for Genes Day in 2014, 2015 or 2016. If they have done, the school cannot be recruited as part of this scheme.

After ascertaining that the school has not held a Jeans for Genes Day in the last three years, the supporter arranges to meet with the head teacher or other member of staff and explains 1) that they are supporting initiative to fundraise for your organisation and 2) that if the school held a Jeans for Genes Day, half of the money raised would support your families and half would support all those affected by a genetic disorder in the UK. The head agrees that it would be something the school would like to do.

To ensure that this school is linked to your organisation, the supporter must ask the school to choose your organisation from the list of affiliated partners at the bottom of the registrations page when going to the Jeans for Genes Day SIGN UP page. Once they have done this, the primary school will be flagged on the Jeans for Genes Day database as a school that was recruited by your organisation. This means that the system will automatically allocate 50% of the income raised by this primary or secondary school to your organisation.

Once the school confirms to your supporter that they have signed up to hold a Jeans for Genes Day, your supporter should inform your organisation’s administrator so that you can also keep a record of the schools and workplaces that your supporters have recruited. Then you can feel reassured that your list should match the Jeans for Genes Day list of participating schools and workplaces sharing their income with both you and Genetic Disorders UK.

On the assumption that this primary or secondary school sends in the money it raised on Jeans for Genes Day by the end of November 2017, you will receive your 50% of the income raised around 15 December 2017. If the school does not donate the income raised until after 30 November 2017, then you will receive your 50% of the income raised around 15 March 2018.

IMPORTANT NOTES

General notes

The one group of schools and workplaces who are not included in this scheme are those who have held a Jeans for Genes Day in the previous three years as these are considered to be 100% Jeans for Genes Day supporters.  

If the school or workplace your member recruits continues to hold a Jeans for Genes Day in future years, then your organisation will continue to benefit from 50% of the funds they raise.

There are currently three categories of members who may benefit from the 50/50 income share scheme. These are:

  • Genetic disorder specific charities and patient groups based in the UK
  • Special schools, hospitals, and hospices based in the UK
  • Charities based in the UK who provide support services to a wide range of users including those affected by a genetic disorder

Notes for genetic disorder charities and patient groups

Members of genetic disorder charities and patient groups may sign up all types of schools and workplaces that have not held a Jeans for Genes Day in the past three years with the exception of special schools, hospitals, hospices and support service organisations.

Genetic disorder specific charities and patient groups may consider the money they raise from Jeans for Genes Day as UNRESTRICTED income and may spend it in the way they feel most beneficial to their members.

Notes for all other organisations who support and care for those affected by a genetic disorder

Special schools, hospitals, hospices and service organisations may only raise money for themselves and must consider the money they raise from Jeans for Genes Day as RESTRICTED income to spend only on projects that would benefit those affected by genetic disorders. These monies must appear in the organisation’s accounts as restricted for this purpose.

Wear Jeans to change lives

Join us for Jeans for Genes Day 16th -20th September