The following testimony is about Rafael, who received life-saving treatment thanks to the intervention of Global Peace Foundation Brazil. Rafael, GPF Brazil wants you to know: “We are grateful to know and love you. May the divine and sacred energy bless your lives forever.” We all at Global Peace Foundation wish you health, happiness, and peace.

Rare Diseases and Human Rights: The Crucial Role of the Global Peace Foundation Brazil in the Treatment of Rafael and its Representation at the UN.

I am Luana Diniz, a lawyer, Brazilian, and activist for people living with rare diseases. I come on behalf of the Rafael Vai Voar Institution to give thanks for the support of the Global Peace Foundation Brazil (Instituto Global da Paz) in resolving the extremely difficult case of my husband Rafael Regis’s hyper-rare disease.

Rafael and Luana at the hospital.

For a decade, Rafael suffered from the worst pain cataloged in medicine and faced a situation of torture: excruciating pain 24 hours a day, extremely high tinnitus, and sleep deprivation. He would not have endured if it weren’t for his unwavering faith and the strength of the support network of family and friends.

The international case of Brazilian Rafael, 28 years old, is an emblematic example of human rights. He had a hyper-rare disease (1 in every 100 million people) in the ear, a combination of multiple cranial nerve neuralgias. It’s a rare condition known as ‘suicide disease.’

It took 7 years to get a diagnosis, with the help of 6 universities worldwide, and assistance from the Ministry of Foreign Affairs of Brazil in international communication. Even with the main federal authorities aware of his suffering and running processes at the administrative and judicial level, his international treatment was not released by the Brazilian Government, showing the absence of a clear public policy aimed at meeting the specific needs of people with rare diseases.

The case became known as the awareness movement “Rafael You Will Fly,” and the lack of a solution for the situation constitutes a serious violation of human rights, constituting inhumane treatment.

His story represents the challenges this population, comprising more than 300 million people worldwide and over 13 million in Brazil alone, experienced.

The Global Peace Foundation Brazil seeks to build peace through community service, strengthening family ties, and youth leadership. Therefore, the Global Peace Foundation embraced the cause of young Rafael. This story fostered the creation of strong and active leadership at a global level in his family and friends to defend people with rare diseases and the values of equality, innovation, and cooperation between countries.

Rafael and his family.

By accompanying people living with rare diseases and their via crucis to access specialized health services, the UN pointed out in the 2021 Resolution “Addressing the challenges of people living with a rare disease and their families” that it is necessary to build public policies for access to diagnosis, appropriate treatment, and reintegration into society of this vulnerable population. This item is a priority on the 2030 Agenda, as within the list of sustainable development goals, attention to rare diseases is among the most delayed.

It was through the involvement of the Global Peace Foundation, an organization with consultative status on the Economic and Social Council of the United Nations (ECOSOC), that we were invited to participate in the SDG Summit at the UN General Assembly of 2023.

As already reaffirmed in the UN resolution, people with rare diseases suffer from a disproportionate vulnerability that affects various areas of their lives. They are cases that suffer from stigma and discrimination, often given as unsolvable and discarded by the community and rulers.

Supporters represent Rafael at the United Nations.

At the Summit, we brought Rafael’s story to the world’s highest authorities, including the UN Secretary-General António Guterres, and the Director-General of the World Health Organization (WHO) Tedros Adhanom. Our presence was for dialogues and exchanges of experiences, but mainly, awareness and advocacy for rare diseases with a focus on the urgent humanitarian case of my husband Rafael.

Today, our fight to access diagnosis, treatment, and reintegration into society is a starting point for a new national and international public policy in favor of rare diseases, also based on a technical note built by us and the Public Defender’s Office of Brazil.

This unimaginable story went viral on social media and made various people in the United States, including NGOs, churches, and ordinary people, help us. We were embraced by the Brazilian, Hispanic, and American communities who united in an unprecedented effort to do what our national and international rulers did not: fund the only treatment that could save my husband’s life.

After the SDG Summit, we had the chance to take Rafael personally to the only specialized hospital capable of operating on him, UConn Health in Connecticut, to be assisted by Dr. Daniel S. Roberts. Dr. Roberts also invited the illustrious Dr. Ketan Bulsara, a world-renowned neurosurgeon and head of the Neurosurgery department at the University of Connecticut. With great expertise and advanced technology, the surgeons performed microvascular nerve decompressions on the intermediate and glossopharyngeal nerves, as well as the vagus nerve and neurotomy of the tympanic plexus. Our hearts ached at the thought of returning to Brazil without Rafael’s cure after having come so far. But fraternity made this miracle possible, and the treatment was all paid for with donations.

Today, we are still in Connecticut, accompanying Rafael’s recovery. The surgery was perfect, and happiness overflowed in our hearts. After the end of his recovery, Rafael will be able to return to his aviation studies and graduate as an airline pilot, as he always dreamed. We are mobilizing so that airlines in the USA can donate all the studies to this young man who represents the struggle for the rights of people with rare diseases.

If it weren’t for the support of CEO Mássimo Trombin, the board, members, and the entire network of the Global Peace Foundation, we would not have reached the UN, an opportunity that brought us to the USA and opened all the paths to Rafael’s cure. GPF is made up of people with a lot of light and love in their hearts who live the principles of the organization every day and work tirelessly for a better world.

GPF extended a hand to us and helped us save a life. It is always worth fighting for a life. Life comes first. Rafael’s story teaches us to live “All together,” to live like the three musketeers, “one for all and all for one.” This story will stay, and one day, the whole world will know the young man who overcame the worst pain.

We are open-hearted for a new life. A life of not forgetting about other lives that also need help, just like Rafael needed so much. In this journey, we will continue and be open to receiving the wise guidance of Mássimo and his entire team because the goals of a better world unite those who have the same purpose.