Kalfos ry is a Finnish patient organisation focusing on X-linked hypophosphatemia (XLH) and other rare metabolic disorders that affect bone mineralisation, for example Hypophosphatasia (HPP). The organisation aims to share information about the disorder, treatment and offer emotional and practical support to patients or their families that are affected by XLH.
Kalfos was founded and registered in 2005. It is a small organisation that is run by volunteers. We hope that in the future we are able to grow as a group and host more educational events and annual meetings for our members.
We aim to help patients get access to best possible treatment available. Our wish is to connect people to others with this rare disease and offer valuable support for patients. We aim to advocate for our patients, strive to improve and equalize care nationwide and to take a stand on standards of care. Our mission is to spread awareness of XLH and other related bone mineralisation disorders.
Kalfos is a member of the Finnish Association of People with Physical Disabilities, which is an umbrella organisation. Finnish Association of People with Physical Disabilities has a Rare Disability Unit. The Rare Disability Unit offers information and support for people with a rare disability as well as to their families. Kalfos is one of the organisations that are in the rare disability unit.
Kalfos has been a part of The International XLH Alliance since 2018. International patient group advocacy has been a huge step for our organisation and getting to connect with other patients and patient organisations from all over the world has been valuable.