Advocacy Communications | 26 May 2017

KP Tsang Voted to the Council of Rare Disease International

Retina International is delighted to announce that our MC member Mr. KP Tsang has been elected onto the Council of Rare Disease International (RDI). In this role he will represent patients living with rare diseases globally. His appointment follows an on-line election process, which ran from April 26 to May 9, 2017.
KP will officially take up his position on the council at the RDI Membership Meeting which takes place in Barcelona in June 2017.

KP is a retired business executive living with Retinitis Pigmentosa (RP), and has been actively volunteering for patients’ groups for decades, both in Hong Kong and internationally. In March 1995, along with fellow patients, he founded Retina Hong Kong, a self-help organisation for patients with retinal degenerative diseases; he has been the association’s serving President since then.

As president of the Hong Kong Alliance for Rare Diseases, and a serving member of the Retina International Management Committee he brings a wealth of experience in the Rare Disease space to RDI at a time of development and growth.

As the Vice-Chairman of Hong Kong Patients’ Voices, a Board member of AMD Alliance, and the Governing Board of the International Alliance of Patients’ Organizations (IAPO), KP also has vast experience of patient advocacy outside of the rare disease space and has been involved in the planning and organisation of regional patient workshops in Africa, Latin America and Asia, and the Global Patients Congresses. His main advocating areas are access to treatment, patient safety, drug safety, medical ethics and patient engagement in the healthcare sector.

Additionally, KP is Vice-President of the Hong Kong Guide Dogs Association and an Honorary Fellow of the Hong Kong Academy of Pharmacy.

On his election KP commented: “It’s my great honor to have this opportunity to represent the retina community to work on the global platform for rare disease. I deeply thank RI and all partner organizations in the field of rare disease. The retina community has common issues with other rare disease groups, for example diagnostic resources, access to innovation and treatment and patient engagement. I will do my utmost to commit to RDI and RI for the wellbeing of people living with all rare disease globally.”‘

Avril Daly, CEO of Retina International and Vice President of Rare Disease Europe (EURORDIS) welcomed the news of KP's election to the Council of RDI ‘On behalf of Retina International I am delighted that our colleague KP Tsang has been elected to the council. RDI was established in 2015 to bring together regional alliances of people living with rare diseases on all continents, as well as international federations such as Retina International, to advocate for policy to enable better access to emerging therapies for Rare Diseases. We are confident that KP's vast knowledge and experience of global advocacy will be of huge benefit to this important movement.

Rare Diseases International is the global alliance of people living with rare diseases.

RDI brings together national and regional rare disease patient organisations from around the world as well as international rare disease-specific federations to create the global alliance of rare disease patients and families.

RDI’s mission is to be a strong common voice on behalf of all people living with a rare disease around the world, to advocate for rare diseases as an international public health priority and to represent its members and enhance their capacities.


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