The National Meeting is an important event for families across the UK and Ireland affected by Wolf-Hirschhorn Syndrome or 4P-. Organised by the Wolf-Hirschhorn Syndrome Trust, it brings together families, carers, supporters and professionals in a welcoming space where they can connect with others who truly understand life with this rare condition. The Trust has supported families since 1994 through information, grants, awareness work, local meetings and national events.

Held every two years, the National Meeting is more than just a conference. It gives families the chance to share experiences, build lasting friendships and feel part of a community that offers understanding, reassurance and support. For many parents and carers, meeting others on a similar journey can be both emotional and empowering.

The National Meeting also helps raise awareness of Wolf-Hirschhorn Syndrome / 4P-, a rare genetic condition linked to a deletion on the short arm of chromosome 4. Alongside bringing families together, the Trust uses its work to support research, share resources and strengthen connections across the UK, Ireland and beyond.

Above all, the WHST National Meeting is about connection, compassion and community. It gives families the chance to come together, learn from one another and create special memories in a supportive setting.

Saturday usually includes workshops, speakers and time to socialise, with mobile care provision/creche available for those who need it, including siblings. Sunday is our fun day, with activities such as stilt walking, bubble shows, performances from groups like Singing Hands and a mobile planetarium.

If a member of your family has WHS or 4P-, please register to receive an invitation to the National Meeting and occasional important updates:

We know that caring for someone with Wolf-Hirschhorn syndrome can bring added financial pressure, whether that is for specialist equipment, therapies, travel to appointments, or everyday essentials. These costs can quickly add up, which is why we want to help families find support wherever we can.

We can guide families towards grants and funding opportunities that may help make things a little easier. This may include signposting to charitable trusts, support funds, and other organisations that offer help with equipment, home adaptations, therapies, respite, and other important needs.

Applying for grants can often feel daunting, especially when families are already juggling so much. We want to make that process feel less overwhelming by sharing helpful information, practical guidance, and support along the way.

Above all, we want families to know they are not alone. Whether someone is looking for help with an immediate need or trying to find longer-term support, we are here to point them in the right direction and help them access opportunities that could make a real difference.

We offer support by being there for families in a way that feels personal, compassionate, and genuine. A diagnosis of Wolf-Hirschhorn syndrome can leave families feeling overwhelmed, isolated, and unsure of where to turn, and that is why we are here — to make sure no one has to face that journey alone.

We create a safe and supportive community where families can connect with others who truly understand the realities of life with Wolf-Hirschhorn syndrome. Sometimes the greatest comfort comes from speaking to someone who just gets it — someone who understands the challenges, the emotions, and the day-to-day experiences without needing them explained.

Our support is not only about sharing information, but also about offering reassurance, encouragement, and a listening ear when it is needed most. Whether a family is newly diagnosed, facing a difficult period, or simply needs guidance and connection, we aim to be a source of strength and comfort.

Through our community, events, and shared experiences, we help families feel less alone and more supported. Above all, we want every family to know that they are seen, they are heard, and they will always have a place within our community.