RDI Council

JOHN DART

John Dart has been a member of the EURORDIS Board of Directors since 2010 and currently serves as General Secretary. He was a member of the Pre-Formation Group set up to guide the establishment of Rare Diseases International and was elected as a member of the Rare Diseases International Council in April 2016. John has worked for UK and international patient groups for over 30 years, initially as the director responsible for patient services provided by the UK Multiple Sclerosis Society and then as the Director of Westminster MENCAP, providing community services for people with learning disabilities.

Since 1989 he has worked in the field of epidermolysis bullosa (EB). As the director of DEBRA UK he played a leading role in the establishment and funding of the patient group funded research grant programme and in the establishment of the four national UK Centres of Expertise, funding the specialist EB nurse and community support posts. He founded DEBRA Europe in 1992, which subsequently expanded to become DEBRA International, and served as the Chief Officer of both organisations. DEBRA International now has a presence in over 50 countries worldwide.

John retired from DEBRA UK in 2013 and from DEBRA International in 2015 but continues his involvement in a voluntary capacity as the Senior Adviser to the DEBRA International Executive Committee.

MEGAN FOOKES

Rare Voices Australia (RVA)

Megan Fookes, OAM, a former educator and mother of 2 children (one who is diagnosed with a rare disease as well as herself), is a co-founder of the National Organisation for Rare Diseases in Australia called Rare Voices Australia. She served for 4 years as their Executive Director and is on the Board of Directors and now appointed as RVA’s Advisor, Policy & Stakeholder Relations. Megan is also a voluntary Director of a rare disease patient organisation called Fabry Australia.

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. She has been working in the rare disease sector since 1999.

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 sits on many other Committees and Advisories and served on the Fabry International Network Board for 3 years as Secretary and President.

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.

This year Megan Fookes, was awarded the Medal of the Order (OAM) on Australia Day. 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

YANN LE CAM

European Organisation for Rare Diseases (EURORDIS)

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.

RAMAIAH MUTHYALA

Indian Organization for Rare Diseases (I-ORD)
Ramaiah Muthyala, Ph.D. is founder of Indian Organization for Rare Diseases, (IORD) (2003). It is an umbrella organization representing all rare diseases and patients in India. Its mission is to raise the awareness of rare diseases, advocate public policy and promote orphan drug development. Due to IORD efforts, the phrase – rare diseases is no longer foreign in India. It is member of EURORDIS, APARDO, CORD, NORD, NZORD, ICORD, Rare Voices Au and member of RDI. Ramaiah serves as co-chair of Working Group on Chemically-Derived Products including Repurposing, Therapies scientific committee of IRDiRC. Also, Ramaiah was founding member of “In need of Diagnosis” whose mission is to assist patients who need diagnosis of rare diseases; and has 25+ years of experience in orphan drug discovery and development in pharma as well as academic institutions.

LISA PHELPS

National 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.”

ALFREDO TOLEDO

Ibero-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”

DURHANE WONG – RIEGER

Canadian Organization for Rare Disorders (CORD)

“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 would be 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.”