MPN Voice - A Brief History of Patient Advocacy Group
MPN Voice had humble beginnings in 2002 with a small group of patients aiming to provide reliable information and patient-to-patient contact. Over the years, it grew significantly, establishing a formal presence and expanding its activities to include research support, conferences, and advocacy. Lessons learned include the importance of committed individuals and the challenges of fundraising and sustainability.
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MPN Voice A brief history
MPN Voice the beginning Started informally in about 2002 by a group of 5-6 patients who were under the care of the same Haematologist at Guys and St Thomas in London Professor Claire Harrison Aims were initially to provide: Reliable and up-to-date information Patient-to-patient contact At first, we simply met approximately every 6 months in a meeting room at the hospital
MPN Voice early growth First website was about 6 pages, mostly about the conditions and their treatment Production of printed material with medical information The meetings became larger (20-30 patients and carers) Fundraising activities started (individuals and small groups) the money mostly went to pay for printing
MPN Voice formal establishment We became a recognised group under the umbrella of a UK registered charity based at Guys and St Thomas hospital - enabled us to receive larger amounts of funding from a few corporate and family trust donors. 2nd generation website with more pages, professionally produced Establishment of the buddy network for peer-peer support A few meetings outside London, based around regional centres of MPN expertise Larger fundraising events
MPN Voice ongoing Research support funding of an initial phase of an epidemiology study Regular regional meetings 3rd generation website Bi-annual full day conference for 200+ Advocacy activity representation at NICE HTAs Focus remains on patient support, information and patient contact Approximate annual turnover 200k
MPN Voice lessons learned Enabling factors Challenges Committed individuals Most activity is voluntary (only 1 part-time paid person) Simple, achievable aims Informal responsibilities Operation under an umbrella legal entity Donor information can be hard to obtain Gradual growth Highly dependent on a few individuals
