ROME (ITALPRESS) – The official presentation of the Alopecia Areata White Paper and its Manifesto was held today at the Senate’s Santa Maria in Aquiro Institute Hall.The event was a crucial moment to raise awareness among the public, institutions and the scientific community about the physical, psychological and social impact of this autoimmune disease, which is still too often underestimated.The project, carried out by FB&Associati and desired by the Italian Association of Alopecia Patients and Friends OdV (AIPAF OdV), received the patronage of the most authoritative Scientific Societies in the field, including the Association of Italian Hospital Venereal Dermatologists and Public Health (ADOI), the Italian Society of Medical, Surgical, Aesthetic and Sexually Transmitted Diseases Dermatology (SIDeMaST), the Italian Society of Trichology (S.I.Tri.), the Italian Society of Pediatric Dermatology (SIDerP), and the Italian Federation of General Practitioners (FIMMG) and was realized thanks to the nonconditional contribution of Giuliani, Lilly, Pfizer, CRLab, and Difa Cooper Cantabria.Today’s meeting highlighted the active and central participation of all the actors involved in the project, along with institutional representatives and scientific experts. AIPAF OdV, in close collaboration with the actors present, stressed the crucial value of a strong and structured synergy to transform patients’ needs into concrete and targeted actions. “Alopecia Areata is not just an aesthetic issue, but a condition that deeply affects the lives of those affected. That is why it is essential that it be recognized at the institutional level as a disabling disease, to ensure that patients have access to treatment, psychological support and services that help them live with serenity. As AIPAF OdV, we are working to create awareness and push for patients to receive the respect and support they deserve. For many patients, hair loss is not only a physical problem, but also an emotional and social one. As an association, we are committed to creating a support network that offers assistance, information and, above all, freedom of choice: If a person wants to wear a wig or show off without hair, they should be able to do so without fear or prejudice. We want every patient to feel free to live their condition without shame, with the knowledge that they have a supportive community behind themè, says Claudia Cassia, president of the Italian Alopecia Patients and Friends Association OdV (AIPAF OdV).Scientific community, institutions and patient associations work in synergy to improve the quality of life of those who face this condition every day, which affects 0.2 percent of the general population, regardless of gender, skin color, eating habits, hygiene and personal behaviors. “In recent years, we have made significant strides in understanding the sophisticated immune mechanisms that cause Alopecia Areata. Thanks to these discoveries, we can now use target drugs, aimed at selectively targeting the intimate mechanisms underlying this disease. Such drugs already successfully used in other autoimmune diseases such as rheumatoid arthritis may also be used to treat patients with Alopecia Areata. Our hope is that in the future the therapies will become even more effective and personalized, allowing those suffering from this disease to significantly improve their quality of life, says Alfredo Rossi, Associate Professor at the Dermatology Clinic of the University of Rome La Sapienza, Policlinico Umberto I.”The ‘Alopecia Areatà White Paper’ represents an important step to raise awareness among both physicians and patients-continues Michela Valeria Rita Starace, Dermatology Unit, IRCCS Azienda Ospedaliero- Universitaria di Bologna, Policlinico S. Orsola-Malpighi, Department of Medical and Surgical Science, Alma Mater Studiorum – University of Bologna. It is a tool that helps to disseminate scientific and practical information, making the treatment pathway clearer and more accessible. In addition, it is fundamental in promoting the recognition of patients’ rights, because it sheds light on their real difficulties and needs, strengthening their voice and demand for adequate care. Most importantly, it is an important means of dignifying this disease. The white paper wanted to devote a special focus to the role of the General Practitioner, a key figure for the patient with Alopecia Areata. ‘The General Practitioner (GP) is the first point of access to care for most patients, including for conditions such as Alopecia Areata, which has a strong emotional as well as physical impact. Our role is critical to identify symptoms early, refer to the specialist, and provide ongoing support. To enhance the value of the GP in this pathway, it seems useful to promote specific training on the pathology and to strengthen the link with dermatologists, creating an integrated care team that can best respond to the needs of patients,” emphasizes Giuseppe Zagami, FIMMG Deputy National Executive Continuity of Care. “Alopecia Areata is not only a medical pathology, but a phenomenon with significant social, relational and economic implications. The direct costs for clinical management and the indirect costs related to loss of productivity, social isolation and psychological impact can be extremely significant. This white paper stands as a valuable tool for understanding not only the health burden, but also the burden this disease exerts on society as a whole, inviting reflection on the need for more inclusive health policies and adequate resources to address it, continues Giovanni Ciofalo, Associate Professor in Sociology of Cultural and Communicative Processes at the Department of Communication and Social Research, Sapienza University of Rome.Awareness raising and patient support represent a key aspect in addressing this challenge. Alopecia Areata is a condition that can greatly affect the psychological well-being and self-esteem of those affected. “Alopecia Areata, like many other autoimmune diseases, requires attention beyond just medical treatment, investing in prevention, early diagnosis, and comprehensive support for patients. The Parliamentary Intergroup for the Prevention and Treatment of Autoimmune Diseases, which I had the honor of founding, was created precisely with the goal of giving a voice to diseases like this that are too often ignored. The presentation of the White Paper on Alopecia Areata is an important step toward a more aware, multidisciplinary and inclusive approach, capable of responding to the real needs of those who live the difficulties of these diseases every dayè, says Senator Ignazio Zullo, Member of the 10th Permanent Commission (Social Affairs, Health, Public and Private Labor, Social Security), Senate of the Republic. The Alopecia Areata White Paper will offer for the first time a national overview of the care pathway for patients with this pathology, in order to build a system that fully recognizes the needs of patients, fostering collaboration between patient associations, physicians and policy makers “Currently, Italian legislation provides several measures to support patients with chronic diseases, but for Alopecia Areata it is necessary to do more. Institutions can intervene by promoting the recognition of the condition as part of chronic and disabling diseases, thus facilitating access to treatment and psychological support services. My commitment, and that of the I Commission, is to work so that attention is increased on these issues and health policies are developed that recognize and respond to the specific needs of those who live with this diseaseà, stresses Augusta Montaruli, Member of the I Commission (Constitutional Affairs, Presidency of the Council and Interior), Chamber of Deputies.Concludes the Italian Society of Trichology (S.I.Tri.): ‘The White Paper on Alopecia Areata represents a crucial reference point, an authoritative synthesis that finally brings a complex and often misunderstood pathology to the center of scientific and social debate. For us at S.I.Tri., this document is a manifesto that promotes knowledge, sensitivity and innovation. Its realization allows us to chart a clear path to improve diagnosis, access to care and support for patients, giving back to this condition the dignity it deserves and offering concrete answers to the needs of those affected by it.
– photo FB&Associates press office-(ITALPRESS).
