Jean-Phillipe Plançon has been living with a rare peripheral neuropathy since 2000. He founded the French Association against Peripheral Neuropathies in 2006 and is co-founder of the French Alliance of Rare Peripheral Neuropathies Patients Associations. At the European level, he is the chairman of EPODIN, the European Patient Organisation for Dysimmune and Inflammatory Neuropathies. National advisor of the Rare Diseases French Alliance, graduated in the field of rare diseases, education, public health, sciences and health law, he also advocates at the national and European level to improve quality of life of patient within several expert working groups and to health policy makers.
Jean-Phillipe took part in an interview in which he was asked about his role within the network and his expectations. Below is a transcript of the interview which has previously featured in the EURO-NMD monthly newsletter .
a. Tell us a little bit about yourself
“I am 50 years old and I have been suffering from a very rare peripheral neuropathy called Multifocal Acquired Demyelinating Sensory and Motor neuropathy (MADSAM or Lewis-Sumner syndrome) for 20 years. I have been involved in patient organisations both at national and international level for many years.
At the national level, I founded in 2006 the French Association against Peripheral Neuropathies (AFNP) and in 2016 the French Alliance of Rare peripheral neuropathies patients’ associations (Alliance-Neuro), a grouping of different associations involved in the field of rare peripheral neuropathies (acquired and genetic) created in the aim to work together on common issues and strengthen the voice of patients in this area.
At the International level, I am one of the founders and the chair of EPODIN (European Patient Organisation for Dysimmune and Inflammatory Neuropathies), recently created to strengthen the patient’s voice at the European level and to give each European citizen living with a rare immune-mediated peripheral neuropathy the opportunity to reduce the burden and inequalities due to the disease. Since 2012, I am also in liaison with the GBS-CIDP Foundation International, a US patient’s support group.
My professional background is mainly related to health, education and health law.
I am married and I have a daughter aged 19. My wife and my daughter are two pillars in my associative commitment.”
b. What is your role in EURO-NMD?
“Elected to be a member of the European Patient Advocacy Group for the European Reference Network EURO-NMD in 2016, I am involved in several working groups such as the educational board that I co-chair with a clinician; the peripheral neuropathies sub-group in which I work closely with other national and European patient organisations; the ERN Working Group on Legal & Ethical issues & relations with Stakeholders, very important topics if we consider a long term vision for ERNs.
In a general way, I try to add the voice of patients as much as possible because I believe health care systems and healthcare professionals are first of all working for people affected by (rare) diseases. Each of us has got a role to play in improving health care.”
c. What are your expectations of the Network?
“I think ERNs can really help to improve diagnosis, treatment access and change patient’s lives in all Europe. Within EURO-NMD, since the beginning, patient representatives are involved in the functioning of the network (i.e. executive committee and each sub-group). It is very important because, we can really work with all stakeholders, share and add our perspective from patients. In the future, it will probably necessary to go further in the integration of patient expertise inside the structure of each ERN and I think rare diseases networks must become a full member of the whole scientific and medical community. For example, our ERN should be able to develop its own guidelines and recommendations in the neuromuscular domain. It means a new European regulation to give more financial self-governance and regulatory autonomy.
In my opinion, this is just the beginning of the story of ERNs and it’ll take a while to learn working together, but I am very proud to be part of this international process to improve quality of life of thousands of people in Europe.”