David Rose

Business Development Associate, Rare Revolution Magazine

David Rose

David lives with the ultra-rare disease Occipital Horn Syndrome and a few other chronic health conditions. He is trying to raise awareness of his own condition and supporting others living with theirs.
He is a Business Economics graduate with a demonstrated history of public speaking to large audiences.  Skilled in sales, journalism, marketing and social media, he uses his skills in his role at Rare Revolution Magazine.
David has been speaking at various conferences and events for the last twelve years about all aspects of life with a rare disease, from areas such as employment and education to relationships and friendships and has devoted many years to volunteering at Great Ormond Street Children’s Hospital.

The Reflection Room: RAREnthood

David will join a panel of young(ish)!  men to explore the diversity of experiences of growing up, living with rare conditions, and considering parenthood.  Diagnosis differences, family life, the impact of hospital stays and recovery time on education and career, rare parenthood, cultural perspectives, relationships and mental health. Nothing is off the table.

My three wishes for rare diseases are:

  1. More ultra-rare diseases getting better recognition in pharma and medical schools.
  2. For more GP practices to see what they can do to make life easier navigating a tricky NHS at the moment.
  3. For more medical students to learn more about rare diseases, so it’s in their knowledge at the start of their career to make it easier for rare disease patients they see in the future.