Of 23 bone-condition patient groups, 39% represent patient interests to regulators, most commonly through public hearings and consultations (29%). Advocacy focuses on healthcare policy and equitable access to healthcare and rare therapies (29% each).
39% of respondents from Bone conditions ‘Regularly’ or ‘Sometimes’ represent patient interests to drug regulators
Patient groups representing each Bone conditions sub-type
23 patient groups across 5 sub-types
interactions
We provide formal submissions, and I have personally participated in consultation processes — for example, as part of the working group tasked with developing the pharmaceutical reimbursement system.
Annamme lausuntoja ja itse olen osallistunut kuulemiseen esim. lääkekorvausjärjestelmän kehittämistyöryhmälle.
National bone-conditions patient group, Finland
interactions
By participating in regional and national policy-setting forums on rare diseases and skeletal dysplasia conditions more broadly.
Partecipando ai tavoli regionali e nazionali in ambito di definizione delle politiche riguardo alle malattie rare ed in generale alle condizioni di displasia scheletrica.
National bone-conditions patient group, Italy
actions & advocacy
Access to Palovarotene [to reduce the formation of abnomal bone tissue in people with It is indicated for patients with the ultra-rare genetic disorder Fibrodysplasia Ossificans Progressiva (FOP)] via the PBS [Pharmaceutical Benefits Scheme] listing.
Access to Palovarotene via the PBS listing.
National bone-conditions patient group, Australia
actions & advocacy
We successfully halted the withdrawal of public reimbursement for SYSADOAs [Symptomatic Slow-Acting Drugs for Osteoarthritis], an effective and well-established treatment for osteoarthritis.
Paramos la desfinanciación de los SYSADOA, tratamiento efectivo y seguro para la artrosis.
National bone-conditions patient group, Spain
The percentages below highlight how the 7 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
3 mentions
1 mention
1 mention
1 mention
2 mentions
2 mentions
1 mention
1 mention
actions & advocacy
4 mentions
2 mentions
2 mentions
2 mentions
2 mentions
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
