Patient Liaison Volunteers

Patient Liaison Volunteers

Patient Liaison Volunteers


These are volunteers who are forging links with patients and patient foundations. They are seeking to spread the word about the Webinars and other ways that patients with rare diseases are being empowered by the information provided by PRDPF! The Putting Rare Diseases Patients First! organization provides a unique opportunity for those wanting to serve patients with rare diseases. Because it will be important to expend significant amounts of time training volunteers to represent PRDPF! we are requiring all volunteers that are formally selected for the roles to commit a minimum of 3 weeks of ten hours per week.

Retires are welcomed

These are volunteer positions –

several positions are available. Responsibilities will be assigned
according to the geographical location of the volunteer, and experience level.

Patient Liaison Volunteer Responsibilities:

  • Sits on the Patient Liaison Committee
  • Make telephone calls to Patient Foundations in the resident country.
  • Invite these foundations and patient support groups to register for their patients to benefit
  • Assist PRDPF! with outreach to patients and families affected by rare diseases
  • Find out what the needs of the individual rare disease patient groups are in terms of new
    treatments and diagnostics.
  • Facilitate the connection of patients and families with PRDPF! via email and phone
  • Develop educational materials to send out to patient foundations based on guidance from Dr. Speid.

Outreach Responsibilities:

  • 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

Liaisons should not:

  • Give medical advice
  • Feel compelled to assist patients and their families with personal problems
  • Share confidential information


UK (England, Scotland, Wales),France, Italy, Germany, Switzerland, Sweden, Norway,
Finland, Other countries in Europe, Canada, South East Asia, China

 Required Job Qualifications:

  • A minimum of 10 years of relevant work experience is a must
  • At least a first Bachelors degree
  • Pharmaceutical industry experience is preferred
  • May have a rare disease
  • Be self motivated
  • Have excellent written and oral communication skills.
  • Excellent command of the English language
  • Ability to empathize with patients and parents.
  • Ability to take the initiative
  • Self starter
  • 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.

Closing Date for applications: May 4th 2023

  • Send an email to lspeid@prdpf.org with a cover letter explaining why you want to be considered for this important roles.
  • Provide a CV/resume.
  • The latter must detail past work experience and skills gained.