As part of Rare Disease Day, AELMHU, represented by its director, Marian Corral, participated in the closing ceremony of the presentation of the "Unmask the Rare" campaign, organized by the biopharmaceutical company Sobi in collaboration with the Spanish Federation of Rare Diseases (FEDER). This campaign seeks to raise awareness in society about the situation of people suffering from these diseases, which affect less than 5 in every 10,000 people and face numerous obstacles in their daily lives, both in the health sector and in social, educational, and work environments.
During her speech, Marian Corral highlighted the importance of collaboration between all stakeholders involved in addressing rare diseases and the needs of patients, their families, and caregivers. "Although there are still major challenges to overcome, the key to progress lies in the union between the administration, politicians, clinicians, the pharmaceutical industry, and entities such as FEDER." This collaboration is essential not only to improve treatments and diagnoses, but also to increase visibility and social awareness of the reality faced by those affected. The pharmaceutical industry, in particular, plays a crucial role, as it is not only involved in the research and development of innovative treatments, but also in raising social awareness, helping to break down the stigma and discrimination that these patients often face.
In her speech, AELMHU stressed that it is vital to take into account the specific characteristics of rare diseases in order to create a comprehensive approach that focuses not only on the medical aspects, but also on social, educational, and occupational aspects. The lack of rapid diagnosis and the limited availability of treatments remain one of the main obstacles faced by people with rare diseases. However, the director also stressed that the pharmaceutical industry has the capacity to positively influence these aspects through its commitment to research, but also through awareness-raising and action on all possible fronts.
One of the most notable aspects of the "Unmask the Rare" campaign is its focus on raising awareness of rare diseases and eradicating the discrimination suffered by those who have them. According to data presented during the event, 43% of people with rare diseases have suffered some form of discrimination throughout their lives, whether in social, educational, or work settings.
Institutional presence
The participation of institutional representatives was also key to ensuring that the campaign does not remain merely an awareness-raising exercise, but translates into concrete action. Pedro Gullón, Director General of Public Health and Health Equity, spoke on behalf of the Ministry of Health, reiterating the need for a comprehensive national strategy to address rare diseases. Gullón stressed that it is essential to improve early diagnosis, facilitate access to National Reference Centers (CSUR), and reduce co-payments that affect patients. He also underscored the importance of addressing all areas of a person's life with a rare disease, from their health to their social and labor integration, with the aim of eliminating any type of barrier that prevents their full participation in society.
On the other hand, the intervention of the spokespersons for Health of the Popular Party (PP) and the Spanish Socialist Workers' Party (PSOE) in the Senate, Enrique Ruiz Escudero and Kilian Sánchez, respectively, also underscored the political commitment to patients with rare diseases. Both representatives highlighted the urgency of continuing to advance in the creation of public policies that promote equity in diagnosis and access to treatment. The support of political parties is essential for patients' demands to be heard and for the necessary changes in legislation and public health policies to be achieved.
Patients at the center
Patients, who are the real driving force behind the campaign and the reason for all the efforts made, played a key role in the campaign launch.
Juan Miguel Martínez Bueno, a patient with Melkersson Rosenthal syndrome and isolated agenesis of the corpus callosum, and Ana Ortega, mother of a girl with an unknown mitochondrial disease, gave voice to unmet needs through their testimonies. Their presence at these events is essential to highlight the importance of working for their well-being and quality of life.
It is crucial that all stakeholders, from social organizations to the pharmaceutical industry and political representatives, continue to work closely together to ensure that people with rare diseases receive the necessary support in all areas: health, social, educational, and employment.
The challenge of rare diseases continues to face many obstacles, but initiatives such as "Unmask the Rare" provide an opportunity to bring about meaningful change. These types of initiatives not only seek to raise awareness of rare diseases, but also to foster a real commitment to research, access to treatment, and improving the quality of life for patients. Furthermore, the active participation of all sectors involved, including civil society, politicians, and the pharmaceutical industry, will be key to ensuring that people affected by rare diseases have a more equitable future free from discrimination.
Thus, AELMHU continues to work alongside other entities in the sector to ensure that rare diseases are not overlooked, but rather become a collective challenge that mobilizes resources, visibility, and action to improve the lives of millions of people in Spain.
