Alexandra Heumber Perry at APARDO

RDI Participates in the 2023 APARDO Conference alongside Rare Disease Groups From Across Asia

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RDI CEO Alexandra Heumber Perry participated in the 2023 Asia Pacific Alliance of Rare Disease Organisations (APARDO) Conference from 24-26 November. The event, co-organized by the Malaysian Rare Disorders Society, brought together 150 stakeholders from 15 countries across the Asia-Pacific region, including Malaysia, Indonesia, India, Korea, Nepal, China, Hong Kong, the Philippines and Australia.

The conference was a testament to the power of grassroots advocacy, peer-to-peer learning and a multi-stakeholder approach: APARDO members, partners and experts shared inspiring experiences, success stories, and promising ongoing initiatives.

The Malaysian Ministry of Health, leading by example, pledged to leave no one behind by including PLWRD in its health priorities, including setting up a specific fund for rare diseases and calling for a global framework for rare diseases.

Conference speakers underlined the value of treatment and the importance of investing in newborn screening, diagnosis and care for rare diseases, as well as the value of economic social burden data.

PLWRD shared their challenges and solutions, showing that each rare disease has its specificities, but that patients and carers are the drivers in meaningful patient care pathways. Further, real-world data, from the patients and by the patients, is critical for increasing patient-centered, affordable and accessible therapies.

The conference emphasized the need for a global framework for action to take advantage of the fertile ground of the moment for translating commitment into impact at the regional, national and local levels and the critical role that APARDO members and other regional alliances play within the rare disease ecosystem.

photo of RDI members with RDI banner

RDI Members from Across the Globe Gather in Barcelona for Annual Membership Meeting

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At the first in-person membership event since the Covid-19 pandemic, RDI members from across the globe gathered in Barcelona on 30 October 2023 to discuss their vision for the future of the rare disease community.

The meeting kicked off with an ice breaker in which members were asked to create a quick sketch of their vision of something they would like to see in the next four to five years. They then presented these sketches to a larger group, organized by region — Asia-Pacific, Africa, the Americas, and Europe — with a fifth group representing global alliances.

While PLWRD face different challenges in these different regions, there were many common themes that emerged: equity, inclusion, access, representation, and universal health coverage. These key points will help to shape and guide the vision and mission of RDI over the coming years.

After a brief coffee/networking break, the members were joined by several partners from RDI’s Alliance of Companies for a panel of patient advocates from around the world, moderated by RDI Council Chair Durhane Wong-Rieger, President and CEO of the Canadian Organization for Rare Disorders (CORD).

The diverse panel included Antoine Gliksohn of the Global Albinism Alliance, Mirjam Mann of ACHSE (Germany), Eda Selabatso of BORDIS (Botswana), Monica Ferrie of GSNV (Australia), Regina Prospero of Instituto Vidas Raras (Brazil) and Jiaying Zheng of the China Alliance for Rare Diseases (CHARD). The panel was followed by a Q & A and group discussion.

The event was a fruitful and constructive way to open RDI’s participation in the World Orphan Drug Congress, with members going on to represent the rare disease patient community in formal panels, presentations and roundtables, as well as informal discussion with representatives from pharmaceutical companies, NGOs and policy-making bodies.

Six panelists on stage

RDI Members Elevate the Voices of PLWRD at the World Orphan Drug Congress in Barcelona, Spain

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Forty RDI members from 6 continents attended the World Orphan Drug Congress in Barcelona from 31 October to 2 November, 2023, participating in presentations, panels and roundtables, actively representing their communities and speaking in a common, united voice on behalf of Persons Living with a Rare Disease.

Some key messages from our members:

🔑 The importance of patient empowerment through the full development cycle of treatment 
🔑 The importance of patient care pathways to enable access to diagnostics, treatment and care
🔑 The importance for countries to prioritize rare diseases and have a policy framework in place to increase equity and access to diagnosis, treatment and care
🔑 The importance of recognizing that the patient journey goes beyond access to treatment and requires a holistic approach, including social support
🔑 The need to acknowledge the mental health impact resulting from living with a rare disease, including social isolation and stigma

Thank you to our members and partners for elevating the voices of PLWRD on this international stage. We can’t wait to see the next achievements of the global Rare Disease community.