Our young person of the month is Daniel Wainstock. Daniel is a 21 year old Brazilian law student at PUC-Rio. Daniel has advocated both nationally and internationally to advance equity and social inclusion for persons living with a rare disease and their families.
Read his amazing story below and be inspired!
DANIEL WAINSTOCK
Over the years, Daniel has had the chance to work closely with lawmakers and policy makers in Brazil, Peru and Colombia, helping them on the development of laws and public policies for persons living with a rare disease. These policies range from reducing/waiving taxation on orphan drugs, to providing a special pension to low-income mothers of a child with rare disease. Due to his activism in this field, he was invited to advise the Permanent Mission of Brazil to the United Nations on drafting the UN Resolution on Persons Living with a Rare Disease.
On How He Started
One day around midnight, Daniel was in the backseat of a cab when the driver received a text message and started to cry displaying a mix of emotions. He was crying and at the same time, he seemed to be extremely happy. Daniel asked if he needed help and found out that the driver’s wife had a rare disease and she needed a very expensive treatment in order to survive. Turns out the driver just got a text from his lawyer saying that they won a healthcare litigation and the state will bear his wife’s medical bills. That was where it all started for Daniel.
According to Mark Twain, “The two most important dates in life are the day you’re born, and the day you find out why”. That was the moment when Daniel found his purpose in life: advocate for persons living with a rare disease. At the age of 17, Daniel entered the PUC-Rio Law School, one of the top 10 universities in Latin America. There he joined several research groups about Health Law and became a member of numerous student organizations such as the Debating Society and the League for Public Policy. He also started to develop academic articles about the need for public policies and national legislation for people living with a rare disease in Latin America.
On His Successes
Daniel has had a series of successes in his endeavours including advising the World Health Assembly (WHA) on the development of the Pandemic Treaty, advising the UN Special Rapporteur on the Right to Health on a report for the General Assembly. He has also advised lawmakers and policymakers in Brazil, Peru, and Colombia on the development of laws and public policies for persons living with a rare disease. His other achievements also include working as an independent consultant for the Global Women’s Institute (GWI) and advising the Permanent Mission of Brazil to the United Nations on the development of the UN Resolution for Persons Living with a Rare Disease.
His Plans for His Project
Daniel’s passion and purpose in life is to advance the provision of Rare Disease Rights in Latin America, and to improve the health outcomes and living conditions of over 42 million people living with a rare disease in Latin America. Currently, about 30% of children living with a rare disease die before their fifth birthday. Children with dreams, feelings, hope. He hopes that they will not be left behind and believes it is time to act.
In July 2022, Daniel is going to present his work at the World Orphan Drug Congress, the world’s largest Congress on rare diseases.
His Words of Advice to the Youth
My favorite quote is from Michelle Obama;
“Success isn’t about how much money you make, it’s about the difference you make in people’s lives.” Sometimes we think that in order to change the world we need to do huge actions, like finding a cure for cancer or combating hunger in Africa.
However, small actions also have the power to change the world (even if it’s the world of only one person). Always be kind, and let your kindness fill the world.
Who will be the next Young Person of the Month?
You can be the next Opportunity Desk Young Person of the Month! All you have to do is get a friend to recommend your work or fill out the nomination form here. We want to use the platform to recognize and celebrate the efforts of amazing young people around the world. Oh! And you must be an active Opportunity Desk member, either as a fan, reader, or subscriber! Share!
