Gabriele Ott, Author at SPAGN - Sarcoma Patient Advocacy Global Network

From chaos to control: Three decades in the continuum of care

May 28, 2024

We celebrate with V Care 30 years of patient advocacy work in Mumbai, India and other states! Integral part of this pioneering cancer patient association is Spandan, a welcoming space for those affected by sarcoma. Spandan means ‘heartbeat’ in English. Vandana Gupta, founder of V Care, explains their mission, success and lessons learnt along the way.

Six great examples of sarcoma patient advocacy to follow this year!

May 7, 2024

A graphic featuring a photo of the award winners from this year's Advocacy in Action Awards with the title of the post and a link to the blog.

This year’s winning projects of the SPAGN Advocacy in Action Awards demonstrate the creativity, deep insights into patients concerns, dedication and professionalism of our members to help improve sarcoma patients access to care and quality of life. A big applause!

My lumpy life as a young adult

March 29, 2024

“After a shower, I noticed an odd lump on my left hip. Two weeks passed, but Lumpy—the name I declared this mysterious lump—remained. Luckily, I had a when in doubt, check it out mentality…” Read about Matt’s sarcoma journey and find out why sarcoma is like skydiving.

Somos raros, mas juntos somos mas fortes!

March 7, 2024

Juntas, duas pacientes brasileiras com tumor desmoide, Carolina Menezes e Georgia Garofalo, fundaram a Desmoide Brasil em 2021. Desde então, a Desmoide Brasil tem – entre outras iniciativas — organizado simpósios, montado exposições, lançado um registro de pacientes, escrito um livreto de boas-vindas para novos pacientes, e estabelecido uma comunidade online ativa no Facebook e WhatsApp. Sua história é uma inspiração!