45% of Neurodegenerative patient groups report representing patient interests “regularly” or “sometimes”, with 23% participating in Health Technology Assessment (HTA) and reimbursement reviews. One in ten seek to influence healthcare policy and legislation.
45% of respondents from Neurodegenerative conditions ‘Regularly’ or ‘Sometimes’ represent patient interests to drug regulators
Patient groups representing each Neurodegenerative conditions sub-type
71 patient groups across 7 sub-types
interactions
The Fédération Française des Groupements de Parkinsoniens [French Federation of Parkinson's Patient Groups] represents Parkinson's patients in health governance bodies and ministerial forums.
Fédération Française des Groupements de Parkinsoniens, nous représentons les patients parkinsoniens dans les instances de Santé et ministérielles.
National neurodegenerative-conditions patient group, France
interactions
In the UK, the health system is very different. The charity does support reviews by NICE [National Institute for Health and Care Excellence], which decide on whether a new drug is adopted by the National Health Care System (NHS [National Health Service]).
In the UK, the health system is very different. The charity does support reviews by NICE, which decide on whether a new drug is adopted by the National Health Care System (NHS).
National neurodegenerative-conditions patient group, UK
actions & advocacy
We work with the ombudsman for reimbursement for one medication which was extremely expensive for the Bulgarian pensioner. This work was a representative good practice in the 6th European day for patients.
We work with the ombudsman for reimbursement for one medication which was extremely expensive for the Bulgarian pensioner. This work was a representative good practice in the 6th European day for patients.
National neurodegenerative-conditions patient group, Bulgaria
actions & advocacy
We include a discussion of medication pricing in our conversations with the state and federal government employees. We are also pushing for lifetime coverage of physical therapy for people with PD [Parkinson's Disease], as maintaining balance as the disease progresses saves both providers and insurers money in the long run.
We include a discussion of medication pricing in our discussion with the state and federal government employees. We are also pushing for lifetime coverage of physical therapy for people with PD, as maintaining balance as the disease progresses saves both providers and insurers money in the long run.
Regional neurodegenerative-conditions patient group, USA
The percentages below highlight how the 30 patient groups interact with regulators and advocate for patient interests. As respondents may be represented in more than one area, percentages may not total 100%.
interactions
12 mentions
7 mentions
2 mentions
1 mention
1 mention
1 mention
5 mentions
3 mentions
2 mentions
4 mentions
2 mentions
2 mentions
4 mentions
2 mentions
2 mentions
actions & advocacy
6 mentions
2 mentions
2 mentions
2 mentions
5 mentions
3 mentions
1 mention
1 mention
3 mentions
2 mentions
1 mention
1 mention
1 mention
1 mention
1 mention
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Our research covers 2,262 patient groups representing 100 countries and 45 therapy areas. The sample report shows you the depth of analysis for a single country or therapy area. To access any other reports, please get in touch.
Visit patient-view.com to gather more information or email: Alex Wyke, alexwyke@patient-view.com
