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APPIS ACADEMY

The APPIS Academy, with the support of its partners, provides year-round offerings to continue capability building.

PARTNERS

2022

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APPIS ACADEMY PRODUCTION

Elevating Patients’ Voice in Policy Advocacy | An SMA Perspective

Julie Cini, CEO of Advocacy Beyond Borders, lost two beautiful baby girls to spinal muscular atrophy (SMA), a rare genetic disorder, over a short span of three years. These tragedies didn’t break her, but instead they drove her to invest all her energy into patient advocacy and fulfilled her vow to “fix this disease for kids in Australia”.

 

Uncover how she overcame roadblocks to shake up the Australian healthcare landscape of newborn screening and genetic carrier screening, to getting three life-changing SMA wonder drugs passed in Australia.

 

In the video, Julie also talked about prioritizations, striking up partnerships, amplification of patients’ voice, funding and engaging patients in the policy advocacy.

Part 1

  • Introduction

  • About Advocacy Beyond Borders

  • About spinal muscular atrophy (SMA)

Videos subtitles:

Part 2

  • Background on the Australian healthcare landscape with regards to newborn screening and genetic carrier screening

  • Roadblocks and pain points experienced

  • Overcoming roadblocks

  • Partnerships to get SMA added to newborn screening in Australia

  • Amplifying patients’ voice

Videos subtitles:

Part 3

  • Engaging patients in policy advocacy

  • Sustainable funding & crowdfunding

  • Advice to new patient organizations

Videos subtitles:

WEBINAR

ADVANCED BREAST CANCER (ABC) GLOBAL ALLIANCE presents

Optimal Management of a Patient with Inflammatory Advanced/Metastatic Breast Cancer

The series talks about providing optimal care for a patient with inflammatory advanced breast cancer, a rare and aggressive disease. Find out the different types of treatments doctors use for people with inflammatory breast cancer and what should be taken into considerations when making treatment plan decisions. Get first-hand views and insights from a distinguished panel of six international renowned breast cancer experts – from Canada, Portugal, France, the United States and Malaysia.

Date:

15 December 2022

Time:

17:00 – 18:00 (Central European Time)

Admission:

Free

Format:

Zoom

Language:

English

More Info:

Discussants

F. Cardoso, Champalimaud Clinical Center and ABC Global Alliance, Lisbon, Portugal

K. Gelmon, BC Cancer Agency, Department of Medical Oncology, Vancouver, Canada

F. Penault-Llorca, Jean Perrin Centre, Comprehensive Cancer Centre, Clermont-Ferrand, France

M.J. Cardoso, Breast Unit, Champalimaud Cancer Center and MamaHelp, Lisbon, Portugal

G. Mason, Inflammatory Breast Cancer Research Foundation, West Lafayette, United States

R.K. Pritam Singh, Breast Cancer Welfare Association Malaysia (BCWA), Petaling Jaya, Malaysia

WEBINAR

ADVANCED BREAST CANCER (ABC) GLOBAL ALLIANCE presents

Managing Metastatic Breast Cancer during Pregnancy

Renowned experts discuss challenging clinical issues, providing expert guidance and leading to develop guideline statement.

Date:

13 October 2022

Time:

13:30 – 14:30 (Central European Time)

Admission:

Free

Format:

Zoom

Language:

English

More Info:

Speakers

Fatima Cardoso, Champalimaud Clinical Center and ABC Global Alliance, Lisbon, PT

and other expert speakers

WEBINAR

FROM TESTING TO TARGETED TREATMENTS ORGANIZATION & PATIENTS FOCUSED MEDICINE DEVELOPMENT COALITION

presents

Tools to improve patient experiences & outcomes in precision medicine and beyond

Find out how to join an active co-creation community with tools and expertise to drive better experience and outcomes for patients.

Session Highlights 

  • Discover co-created resources to improve patient experiences and outcomes in precision medicine and beyond, starting with tools to support advocacy, access, and engagement.

  • Test and enhance these tools, co-created by a multistakeholder community, with your feedback and local experiences.

  • Learn about opportunities to collaborate in future co-creation workshops and pilots

 

Session Presenters

  • From Testing to Targeted Treatments (FT3) Program

  • Patient-Focused Medicines Development (PFMD)

Date:

22 August 2022

Time:

08:00 - 09:00 (Central European Time)

Admission:

Free

Format:

Zoom

Language:

English

More Info:

Click here to view the recordings

E-CLASSROOM

The European Patients’ Academy on Therapeutic Innovation (EUPATI) presents

Introduction to Health Technology Assessment (HTA)

What will you learn?

• What is HTA?

• How HTA is one key mechanism to address the needs of patients

• The best approaches to HTA

• How patients can become involved with HTA and make their participation in HTA more effective

Course information

• This module consists of 5 courses

• Each course ranges from 4-8 hours learning time

• All courses are online and can be taken at any time and in any order

• The courses are offered in English only

Accessing the module

• Click on one of the course options below.

• Then register a “guest” account – this will allow you to access the content of all courses for no fee.

• An Euro 8 fee is applicable if you wish to receive a certificate at the end of the course. For this

option, please register for a “Learner” account.

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