jueves, 13 de julio de 2017

Governance - Rare Diseases International

Governance - Rare Diseases International




Rare Disease International By-Laws



Canadian Organization for Rare Disorders (CORD)
Durhane Wong-Rieger
“My husband and I had the wonderful opportunity to adopt two children, each born with different rare conditions.  We had to take charge of our children’s healthcare, but I count among my most significant contributions my decade with the haemophilia community following the tainted blood scandal to gain compensation, reform, and safe therapies, serving as president from 1994-98.   My volunteer stint with the Canadian Organization for Rare Disorders began in 2006, when I developed an Orphan Drug Policy and headed the advocacy campaign to access to new therapies.  We are encouraged by the significant progress being achieved in rare disease policy, research, services and support in Canada, including the Orphan Drug Regulatory Framework and Canada’s Rare Disease Strategy.   In 2012, I transitioned to a part-time paid CEO position.
I joined EURORDIS to learn as much as possible from European initiatives and momentum and Canada has benefited from the association (Canada was the first non-EU country to adopt Rare Disease Day in 2008).  I believe strongly in the value of international collaboration (serving on the Board of the International Alliance of Patients’ Organizations and as Chair from 2011-2013); therefore, I chose to take an active role in helping to set up the Asia-Pacific Alliance of Rare Disease Organizations, serving as Secretary of the newly registered alliance.
I have been a member of the interim advisory group of Rare Disease International and believe this network has the opportunity to advance rare diseases globally and especially to ensure that rare disease is addressed in those countries with emerging healthy policy, health and social care, and patient support.  I envision RDI as having a key role with international agencies, like the UN and WHO, and also forging international partnerships, including the private sectors.  Finally, it is a privilege to be a part of RDI and to help ensure that patient empowerment is a driving component in all of these activities, across disease and geographic boundaries.”


Megan Fookes, OAM, a former educator and mother of 2 children (one who is diagnosed with a rare disease as well as herself), co-founded the National Organisation for Rare Diseases in Australia called Rare Voices Australia. She served for 4 years as their Executive Director. Megan is also a voluntary Managing Director of a rare disease patient organisation called Fabry Australia and has been involved in the patient organisation since 1999.
Her professional association with Rare Diseases stems from a very personal connection. Her late father waited 48 years to receive a diagnosis of Fabry disease. Her parents who were very keen to learn more and together with other affected families formed Fabry Australia 22 years ago.
Fabry Australia successfully advocated on behalf of the Australian Fabry community to receive two Commonwealth funded therapies back in 2004 under the Life Saving Drugs Program (LSDP).
Megan is keen to utilise her personal and professional experience to make a real difference and advocating for a National Plan and Rare Disease Policy ensuring people impacted by rare diseases have better health incomes in the future.
Megan Fookes, was awarded the Medal of the Order (OAM) on Australia Day in 2016. Megan has dedicated the award to her late father (who died from a rare disease) and to all adults, children and families who are doing their very best living with rare diseases without a formal rare disease policy in Australia.


Lisa-240x300National Organization for Rare Disorders (NORD)
“I have been with the National Organization for Rare Disorders (NORD) for five years, serving as a member of the senior management team in the areas of Membership and Marketing.  I am responsible for overseeing the organization’s relationships with patients, families and disease-specific advocacy organizations.  In this capacity, I have a very good understanding of the needs and interests of patients and the organizations that represent them here in the United States, and would like to further support them by representing them in this international forum. For the last two years, I have also led the planning and coordination of Rare Disease Day in the United States, successfully activating and engaging advocates in each state to participate in raising rare disease awareness.
I believe I could be an asset to the council given my background in health policy, public health and my experience in designing and managing programs of membership, advocacy, education and capacity building.  Having participated on the interim steering council for RDI, I am also aware of its goals, objectives, strengths and challenges.  I believe in its mission and the impact it could have on the lives of patients around the world, and am interested in joining the RDI Council to make a meaningful contribution to its short and long-term growth and success.”


Yann Le Cam is a patient advocate who has dedicated 25 years of professional and personal commitment to health and medical research non-governmental organisations in France, Europe and the United States in the fields of cancer, HIV/AIDS and rare diseases.
He has three daughters, the eldest of whom has cystic fibrosis. Yann is one of the founders of EURORDIS in 1996-1997 and its Chief Executive Officer since 2001. He has participated in the revision and adoption of European regulations having an impact on rare disease patients’ life, including the EU Regulation on Orphan Drugs, December 1999.
He was one of the first patient representatives appointed to the Committee for Orphan Medicinal Products (COMP) at the European Drug Agency (EMA) where he served for 9 years and was its Vice Chairman for 6 years. He served on the Management Board and Executive Committee of the French HTA agency for 5 years, on the DIA Advisory Committee Europe for 3 years.
He was the Vice Chairman of the EU Committee of Experts on Rare Diseases (EUCERD) from 2011 to July 2013, and he is nominated on the current Commission Experts Group on Rare Diseases
In November 2013, Yann Le Cam was elected Chair of the Therapies Scientific Committee of the IRDIRC – International Rare Diseases Research Consortium.


Alfredo ToledoIbero-American Rare Disease Alliance (ALIBER)
MD, graduate from the Medical School of the Uruguayan Republic University. Attended several courses, both nationally and internationally, about Management, Administration, Planning and Evaluation of Projects and Social Policies in general and Health in particular. Master in Business Administration from de American University (MBA). Master in Management of Health (University of Montevideo). Postgraduate in Scientific, Medical and Environmental Communication (University Pompeu Fabra / Barcelona / España). Graduate of the “First Latin American Program Development of Social Managers (CLAD-UNDP-AECI). Graduate of the International Course Design and Evaluation of Social Projects (ILPES- UNDP-CIDES-OEA) Management Specialist, Planning and Implementation of Social Policies and Programs at regional and local level, with particular emphasis on programs and projects aimed at children, poverty and health.
Medical Advisor of ATUERU (All together Rare Diseases Association Uruguay).
Secretary of ALIBER (Iberoamerican Alliance for Rare Diseases).
Member of the PFG (Pre Forming Group) of Rare Diseases International.
President of the IV Iberoamerican Meeting of Rare Diseases (Montevideo/Uruguay, september 2016).
Medical Director of Health Communication XXI Century. Vice president of the Uruguay Medical Union.
Director of Health Foundation “Dr. Augusto Turenne”


The mother of a child with a rare disease, Epidermolysis Bullosa (EB), Ritu Jain has been instrumental in establishing DEBRA Singapore, the EB patient advocacy and support organisation. She also serves as an ambassador for EB Without Borders and as Executive on the Board of DEBRA International. In all these roles, she has worked with DEBRA to offer emotional and material support to patients and families, raise local and regional awareness about the condition, and lobby for policy changes. Further, DEBRA Singapore collaborates with local and international clinicians and researchers as well as pharmaceutical organisations for enhanced research initiatives and clinical trials for improvement in the quality of lives of individuals living with EB. Her familiarity with the culture, conditions, and challenges of those with rare diseases in Asia make her a suitable voice for those living with enormous challenges such as lack of resources and support.


Tsang, a retired business executive with Retinitis Pigmentosa, has been actively volunteering for patients’ groups for some 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.
Kin Ping is also President of the Hong Kong Alliance for Rare Diseases (HKARD; founded in December 2014), the Vice-Chairman of Hong Kong Patients’ Voices (an advocacy platform in the healthcare sector), a board member of AMD Alliance International, and he has been serving on the management committee of Retina International since 2000.
In 2008, he was elected to the Governing Board of the International Alliance of Patients’ Organizations (IAPO) and was the Chair from August 2013 to July 2015.Whilst with IAPO, he has been involved in the planning and organisation of their 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, Kin Ping is Vice-President of the Hong Kong Guide Dogs Association and an Honorary Fellow of the Hong Kong Academy of Pharmacy.

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