The Vice President of Patient Liaison plays a crucial role in forging links with rare disease patients, patient groups and foundations. This requires someone who understands the rare disease space intimately and is well known and connected in the space. This person must have a background that allows them to make a significant contribution to the organization. Suggested backgrounds are executives in the life sciences. Other backgrounds are Physician, Pharmacist, Dentist or Nurse. Although knowledge of the rare disease space is valuable, this person may or may not have a rare disease. Retirees with relevant experience are welcome.
Basis: This is a volunteer position
Reports to the President, Dr. Lorna Speid
Patient Support Responsibilities:
Develop strategies to connect the PRDPF! organization to rare disease patients worldwide
To lead the Physician Liaison Committee and the Patient Liaison Committee
Develop strategies to forge links and connections for PRDPF! with patient foundations globally
Provide training to the committees that are formed to support the Patient Liaison function
Speak at patient conferences on behalf of PRDPF!
Write White Papers and Blogs on behalf of PRDPF!
Forge links with journalists and others who are seeking to understand the rare diseases space
Act as an ambassador for Putting Rare Diseases Patients First!
Help raise awareness and advocate for Rare Diseases Patients First!
Participate in media and public relations efforts when needed
Protect the confidentiality of patients, their families and our strategic information
At least 10 years of relevant experience
At least a first degree (Bachelors), and preferably a Masters or doctorate
Be self motivated
Have excellent written and oral communication skills.
Excellent command of the English language
Ability to empathize with rare disease patients and parents of children with rare diseases.
Ability to take the initiative
Require the minimum of supervision
Integrity and good character are essential for this position
Ability to make telephone calls to hospitals, patients, clinics, patient groups, that are serving the rare disease patient community.
May have a rare disease, but this is not a requirement for the role. However, the ability to empathize with patients with rare disease is an important qualification