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Patient organizations provide information, advocacy, networking, and support resources for affected people and their families. The list below includes the names of many patient organizations that may be helpful. This list is intended to be informative only and is not necessarily comprehensive.

Soft Bones

Soft Bones – USA

Soft Bones, US, is a nonprofit patient advocacy organization dedicated to supporting individuals and families affected by hypophosphatasia (HPP). It focuses on education, awareness, community support and advancing research to improve diagnosis and care for people living with HPP.

Soft Bones – Canada

Soft Bones Canada is a patient advocacy organization supporting Canadians affected by hypophosphatasia. It aims to raise awareness of HPP, connect patients and families, and promote access to information, support and resources for the Canadian HPP community.

Soft Bones – UK

Soft Bones UK is a patient-led charity supporting people in the United Kingdom living with hypophosphatasia. The organization focuses on community support, raising awareness of HPP and engaging with healthcare stakeholders to improve understanding and care for patients.

Kalfos ry

Kalfos ry is a Finnish association that supports people with rare bone diseases. It focuses on education, advocacy, peer support, and improving care and awareness for rare bone disorders in Finland.

Hypophosphatasia Europe

Hypophosphatasia Europe is a France-based organization dedicated to supporting people with hypophosphatasia. The group offers patient and family support, creates educational materials, conducts awareness campaigns, and works with healthcare professionals and researchers throughout France.

Hypophosphatasie Deutschland e.V.

Hypophosphatasie Deutschland e.V. is a German patient association supporting individuals and families with hypophosphatasia. It provides information, counseling, advocacy, and facilitates patient networking and research in Germany.

API (Associazione Pazienti Ipofosfatasia Italia)

API is the Italian patient association for hypophosphatasia. It supports patients and families by providing information, advocacy, and facilitating connections among the rare disease community and specialists in Italy.

Fundacja Hypogenek

Fundacja Hypogenek is a Polish foundation supporting people and families living with hypophosphatasia and other rare diseases. It aims to raise awareness, provide education, and offer various forms of support and advocacy throughout Poland.

Hifo-DER

Hifo-DER is an association supporting patients and families affected by hypophosphatasia and other rare bone diseases. The organization provides education, advocacy, peer support, and works to improve research and care outcomes in Turkey.

Avalon Foundation

The Avalon Foundation is a U.S.-based organization committed to supporting children and adults with rare bone and metabolic diseases. It offers educational resources, advocacy, patient support, and funds scientific research.

HPP Hope

HPP Hope is a Japanese patient advocacy group that supports individuals and families with hypophosphatasia. It focuses on patient support, public awareness, educational activities, and works to improve care and research in Japan.

Casa Hunter

Casa Hunter is a Brazilian non-profit that supports individuals and families living with rare diseases, including bone and metabolic conditions. The foundation provides support, promotes awareness, improves access to diagnosis and treatments, and advocates for patients in Brazil.

AFAG (Associação dos Familiares, Amigos e Portadores de Doenças Graves)

AFAG is a Brazilian association dedicated to supporting people with rare and serious diseases. The organization provides educational resources, advocacy, practical and emotional support, and works to advance the rights and quality of life of patients in Brazil.

MSUK (Metabolic Support UK)

Metabolic Support UK is a UK-based charity supporting people of all ages living with inherited metabolic disorders. It offers education, advocacy, access to specialist information, family support, and works to raise awareness nationally.

VKS (Vereniging voor Volwassenen, Kinderen en Stofwisselingsziekten)

VKS is the Dutch association that supports adults, children, and families with metabolic diseases. The group provides information, builds community, advocates for patient needs, and organizes events to connect and empower those living with metabolic conditions in the Netherlands.

Care4Bones

Care4Bones is an international network with a strong European presence, dedicated to rare bone diseases. It promotes research, connects patients, families, and clinicians, organizes educational activities, and fosters collaboration to improve outcomes for rare bone disease communities.

Acopel (Asociación Colombiana de Personas con Enfermedades Lisosomales)

Acopel is a Colombian association that supports people diagnosed with lysosomal diseases and other rare conditions. Acopel provides educational resources, promotes awareness, facilitates support and advocacy, and works to improve access to diagnosis and treatment options in Colombia.

ANDO Portugal (Associação Nacional de Displasias Ósseas)

ANDO Portugal is the national association for people with rare bone dysplasias in Portugal. It provides information, advocacy, education, networking opportunities, and support for patients and families, working to improve access to care, research, and awareness for all rare bone dysplasias.

Aeryoh (Asociación Española de Enfermedades Raras Osteocartilaginosas Hereditarias)

Aeryoh is a Spanish association providing information, advocacy, and support for individuals and families affected by hereditary rare osteocartilaginous diseases. It promotes research, organizes awareness activities, and connects patients with specialized professionals in Spain.

Russian National Patients’ Union

The Russian Union of Public Patients’ Associations (Russian Patients’ Union, URP) is a national public organization representing the interests of citizens of the Russian Federation as patients.