We were lucky enough to have been invited by CLIMB to hold our first Softbones UK patient afternoon at the CLIMB conference in Birmingham this year. We feel very privileged to have had some real inspirational speakers take part and interesting talks from leading health care professionals on a variety of relevant paediatric and adult topics.
The afternoon started with Professor Eastell, who gave us all an insight into adult hypophosphatasia and the developments in care and management of such patients. He stressed the importance of people and families affected by HPP to sign up to the RUDY study. Currently there is some research taking place in Sheffield for adult HPP. Melanie Williams also spoke about RUDY and the importance of signing up, with HPP being such a rare disease, we are still learning of the affect it has on people, and also the potential implications of family members who may have milder symptoms.
We had talks from Dr Vrinda Saraff, Dr Sarah Mckaig and Claire Sweeney, discussing paediatric HPP, HPP and teeth and therapy and the allied health professional role for children with HPP.
Lyndsay Weaver the CEO of CLIMB gave an update on access to Strensiq. She has been heavily involved in the NICE process to gain access to Strensiq and working with health professionals in putting together the Managed Access Agreement.
We were extremely privileged to have Deborah Fowler, her daughter Grace and Denise Goodbar from Softbones US be part of the conference. Deborah gave a talk on Advocacy, awareness of HPP and the ability to impact access across the world.
The conference allowed the opportunity for us all to meet and for people to share experiences. It was truly wonderful to have a room full of people affected with HPP and we are very grateful to have been part of such a wonderful conference organised by CLIMB.