Looking forward together

​Dear friends,

​We are aware that some of you may be feeling anxious about the future of support services for our XP community, following the announcement of our application to close Action for XP. But we want to assure you that nothing is being lost, and no one is being left behind.
 
All that we have collectively worked for over many decades of support in the UK, will continue, just in a different, more strategic and sustainable way.
 
The team at Action for XP; staff, volunteers and Board of Trustees have worked tirelessly over the last six months, to put in place robust processes to ensure a smooth transition. And while no single charity was able to fully absorb the extent and depth of services we provided globally, we have partnered with a number of organisations to ensure continuity.
 
To help you stay connected and reassured as the transition comes into effect, please see mapped out below what is now in place:

UK SUPPORT​

​Patient support:
Following extensive dialogue with Jayne Hughes at Amy & Friends, they (with effect from 1st April 2026) took over day-to-day patient support for families based in the UK. This will include email and telephone support; continuation of the clinic transport bursary scheme (subject to their own eligibility criteria) and access to confidential bereavement counselling. They have also committed to explore funding opportunities to reinstate our family connection events within the next 2-3 years (timing subject to funding).
 
Please see their recent statement: https://www.facebook.com/share/p/18NNJ4zYe4/
 
You can find their contact details, and sign up to their database to be kept up to date with their services here: https://www.actionforxp.org/
 
Individual and Family Counselling
Access to our Rare Minds, self-referral counselling service will remain in place for current enrolled and new families. Ring-fenced funding has been sent to Rare Minds to preserve this service throughout the year to avoid any impact for those looking to access vital emotional and psychological support.
 
You can continue to access this on a self-referral basis via the following link: RARE MINDS

Patient protection and education resources:
Ahead of our announcement of intention to close we worked hard to identify a number of families throughout the UK who most regularly rely on our provision of UV protective visors and gloves. Each of these families were sent a supply to ensure coverage for the next 1-2 years of protection.
 
The remaining stock of visors, gloves and UV film was sent, by agreement, to the National XP Service at Guys & St Thomas’ Rare Disease Centre, where they are putting in place their own protocol to get these to families at the point of contact during appointments.
 
A stock of Little Ted books and bears and light metres were also provided to the clinic to future proof for newly diagnosed families throughout the year ahead.
  
Information resources: 
We updated our website to capture the most frequently requested advice in one single place so that families can access answers quickly while Amy & Friends get up to speed with their new role.
 
You can access this at any time here: https://www.actionforxp.org/advice-hub.html
 
This includes information on where to purchase important equipment, home protection, health and nutrition, travel, schooling and education, and accessing support. Including downloadable information on DLA/PIP and Blue Badge applications.
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INTERNATIONAL SUPPORT

Patient support and protection:
Following extensive dialogue with Craig Leppert at the US based organisation, Shadow Jumpers, they will now be delighted to be a point of contact for our international families, including the provision of visors, gloves and visor film.
 
They are also holding a number of Little Ted books and bears for newly diagnosed families.
 
You can find their contact details, and sign up to their database to be kept up to date with their services here: https://www.actionforxp.org/
 
In addition to this collaboration with Shadow Jumpers, we identified a number of contacts globally to act as outreach hubs to give enhanced global coverage, and we shipped stock of visor, gloves and visor film to these areas. This includes Somalia, South Africa. Australia and Eastern Europe.
 
Lastly, we wanted to ensure that our remaining stock of Little Ted bears and books had a new home so that as many newly diagnosed children as possible would continue to benefit from the gift of Little Ted throughout 2026 and hopefully into 2027.  Our great friend Wafa Chaabi of Enfants de la Lune, in France, now holds these along with copies of the story books in Arabic, French and English.
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FINAL THOUGHTS…

I hope this reassures you that there is no stoppage of your services, no starting from scratch and no need to feel alone or isolated.
 
While we could no longer sustain the efforts required to deliver this significant body of work year-on-year, the legacy of Action for XP very much continues in Amy & Friends, Shadow Jumpers and Enfants de la Lune.
 
These groups are long established, with the required infrastructure and track record in place to deliver on this vital work and they are ready and waiting to support you and stand with open arms to embrace our community.
 
This is not a step backward, we are stronger together and this represents a positive step forward for us all!
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