Our executive director, Janice Schwartz, was invited to speak as part of a three day course, Genomics for Dermatology, at the Wellcome Genome Campus, UK. Her talk, “Pain, isolation, and the life-changing work of PC Project” highlighted the plight of our patients and the real hope and answers we provide for patients all over the world.
Being asked to participate in the Genomics for Dermatology course was a huge honor for PC Project. The average person, or including most doctors, do not realize the profound and painful challenges patients with rare skin diseases like PC have.
Thanks to the organizers of the course for including patient voices in the program, and for giving rare diseases like PC a platform where we can educate younger scientists and medical professionals that there are real and suffering people for whom their work is making a difference.
After Janice’s presentation, she joined a leader from the UK Ichthyosis Support Group, Mandy Aldwin-Easton, to answer questions from the audience about our patients and the work of our patient advocacy organizations.•
