Ananas: two decades of hope and support for neurofibromatosis patients
Neurofibromatosis (NF) is a rare genetic disorder affecting thousands globally, yet it remains largely misunderstood. In Italy, Ananas APS (Associazione Nazionale Aiuto per le Neurofibromatosi, amicizia e solidarietà), a non-profit organization, has been a steadfast ally for patients and families since 2003. Founded by patients and their parents, this nonprofit has grown into a national force for advocacy, research, and emotional support.
Maria Malatesta, president of Ananas, explores with us the association’s roots, mission, and social impact, and how Konecta Foundation supports Ananas.
From personal struggles to collective strenght
Ananas was born from the lived experiences of its four founders: two adults living with NF1 and two parents of children with the same condition. They recognized the need for a place where patients could find not only medical guidance but also solidarity.
Since then, Ananas has helped build a sense of belonging for the 25,000 people affected by NF in Italy. Through friendship and advocacy, they’ve created a space where no one feels alone.
Thanks to the support of Konecta Foundation, Ananas has recently launched a dedicated project aimed at helping individuals with NF access the job market. The initiative focuses on skills development and training to enhance employability, while promoting a more inclusive vision of work. The goal is to ensure that people with rare diseases can pursue meaningful employment that reflects their capabilities and not only their limitations.
“We believed that by standing together, we could face a rare disease with greater strength.” Malatesta says.
A community with purpose
Over time, Ananas has become what they call a “big family,” where each voice matters and every story is heard. Its core mission is to improve the quality of life for people with NF and Schwannomatosis through emotional, psychological, legal, and practical support.
Their work includes:
- Promoting awareness of NF and the importance of specialized care
- Providing legal aid and psychological counseling
- Supporting scientific research into NF’s genetic mechanisms and possible treatments
- Engaging policymakers and institutions to ensure rare diseases are not forgotten
This holistic, person-centered approach is what makes Ananas’ work stand out, fostering dignity, empowerment, and long-term support for its members.
Women at the heart of the conversation
Ananas pays particular attention to the challenges women face. As its president explains:
“Women can be both the most fragile and the strongest part of a family affected by NF.”
Many mothers breathe the emotional weight of their child’s diagnosis, grappling with guilt and pressure. Some step into the role of fierce advocate, reaching out to Ananas for guidance and answers. Others, living with visible signs of the disease, face discrimination, isolation, or difficult relationships.
Ananas provides tailored psychological support in these cases, ensuring women feel seen and supported, and helping them reclaim their autonomy and dignity.
Impact and milestones
Over two decades, Ananas has achieved major milestones. It is now recognized across Italy’s rare disease landscape, partnering with hospitals, institutions, and other associations. At the European level, it is a founding member of NF Patient United, working to influence rare disease policies and research agendas.
On the ground, its initiatives are practical and people-focused including school education programs, hospital volunteering, legal and psychological services, parenting support, employment training, and more.
“Our biggest success,” Maria Malatesta says, “is the community we’ve built. People who feel they belong, who help one another, and who know their lives matter.”
The partnership with Konecta Foundation
Last year, Ananas launched a new employment-focused project with the support of the Konecta Foundation. The opportunity came through a Konecta employee who is also an Ananas member, illustrating how community and professional networks can intersect for good.
The project supports NF patients in developing job skills and finding meaningful employment. It aims to promote self-worth and inclusion.
“People with rare diseases have so much to offer,” Malatesta continues. “They are not a burden, they are a resource. They bring unique resilience and awareness that enriches workplaces and communities alike.”
A story of courage and connection
Among the many lives touched by Ananas, the story of a mother from Armenia is particularly powerful. She reached out after her 4-year-old son was diagnosed with a severe form of NF1 and despite a devastating prognosis, she refused to give up and contacted Ananas before arriving in Italy. The team immediately stepped in, organizing support, medical consultations, and emotional care. During her time in Italy, Ananas helped ease the pain of separation from her homeland and family, while guiding her through the treatment process.
Today, thanks to this network of support and the skill of Italian doctors, the mother faces the future with greater hope and strength. She knows more about her child’s condition, and more importantly she no longer feels alone.
Ananas APS continues to grow, driven by the belief that no one affected by a rare disease should be left behind. Their work blends advocacy and empathy proves that even in the face of chronic, incurable conditions, there is always space for hope, dignity, and sense of community.
