Announcing our partnership with Tree of Hope Children's Charity

The CF Buyer's Club would like to announce that we have formed a partnership with the amazing children’s charity Tree of Hope.

As a group of parents we understand how difficult raising funds can be, even at generic prices. We know that self-funding a generic is an option unaffordable for the vast majority of people. With this in mind we have been working on a number of options to help support Buyer’s Club members in covering the costs involved - partnering with this experienced charity is one such option.

By fundraising with Tree of Hope families can get the benefits of their registered charity status, which can help to boost funds through gift aid (please see the Buyer's Club Facebook group for more details). Alongside this TOH offer a unique support service and advice and will work closely with us at the CF Buyers' Club and with Breathe With Me Strawfie Challenge to raise media coverage, which we hope will help to increase donations.

Today Tree of Hope are also launching a Cystic Fibrosis Fund, where donations not linked to a specific individual can be made to. This has its own "text to donate" number and this week we are releasing some videos on social media with Tree of Hope to encourage donations, using the hash tag #Hope4CF. The first of these is here:

We now need your help! Please share these videos far and wide from our Facebook and Twitter pages. You could also film a short video yourself, or challenge other parties to. We are looking for people in the workplace, schools, groups, choirs, brownies, scouts, sports teams, or individuals; anything goes:


The more people that can get behind this the better the chance of success, both in terms of raising funds and of course pressurising the government to find a more equitable solution for all. So get sharing and get creative, let’s have a little positivity and #Hope4CF !

Our first CF Buyers Club members start their generic CFTR modulator drugs!

After many months of work behind the scenes, we are pleased to announce that the first set of patients travelled to Argentina last week to pick up their medicines and to have further negotiations with Gador and another company there manufacturing a generic. There is a lot of work going on behind the scenes and we wanted to update you with what we can:


It's looking very positive for patients to have medicines shipped to them from Argentina rather than having to travel, via a courier who will collect from the Argentinian pharmacy (which is how other Buyer's Clubs have operated). The exact mechanism, method of payment, costs etc. for this are being worked on and we'll update as soon as we can.

Clinician support 

NHS England recently released this statement: “We see no reason why clinicians working in the NHS should not provide ongoing clinical care for cystic fibrosis patients who may have been prescribed a drug privately”.

This is certainly a welcome signal of intent, and we are continuing to work towards achieving a nationally supportive policy that will provide backing for all doctors and NHS Trusts. In the meantime it's worth noting that all patients who have wanted and been in a position to proceed immediately have had the backing of their CF teams, i.e. no-one we know of has been refused, once full and detailed conversations have been had.


The Buyers Club was featured on BBC Newsnight last week, you can watch the program here -

and we will be featuring on BBC Inside Out on BBC One South on Monday -

As always, if you are looking to proceed immediately please email the Buyer's Club where we can support clinician conversions if needed and provide you with further detail. Otherwise watch this space for further updates!