Porphyria due to ALA dehydratase deficiency
Synonyms: ALAD porphyria | Porphyria due to ALAD deficiency | Porphyria due to delta-aminolevulinate dehydratase deficiency | Porphyria of Doss
A rare malignant small round cell bone tumor with strong metastatic potential.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Reference: Access aggregated data from Orphanet at Orphadata.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http: //www.orphadata.org. Data version September 2023.
Newly diagnosed with
Porphyria due to ALA dehydratase deficiency?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Advocacy Organizations
Canadian Association for Porphyria
We deliver evidence-based information and support to patients with porphyria, their families, health care providers and the general public across Canada. We help achieve standards and evidence-based comprehensive care for all people with porphyria throughout their lifespans.
The British Porphyria Association
The BPA is committed to advocating for, supporting and educating porphyria patients, relatives and medical professionals, so as to improve the quality of life for those living with the different types of porphyria. We promote disease awareness and the advancement of research into new therapies.
United Porphyrias Association
The United Porphyrias Association is committed to improving the quality of life of the porphyria patient community and is relentlessly focused on advancing disease awareness, research, and therapies in all the porphyrias.
Global Liver Institute
To improve the lives of individuals and families impacted by liver disease through promoting innovation, encouraging collaboration, and scaling optimal approaches to help eradicate liver diseases.
Charcot-Marie-Tooth Association
To develop drugs to treat or cure CMT and to help improve the quality of life for those living with CMT.
Mississippi Metabolics Foundation
Mississippi Metabolics Foundation (MMF) was founded to raise awareness, educate, and provide support to those living or caring for someone with genetic metabolic disorders/inborn errors of metabolism (IEM).
Louisiana Metabolic Disorders Coalition
We support, educate, and advocate for patients & families affected by metabolic disorders.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
Moonshots for Unicorns
Curing single-gene disorders
COMBINEDBrain Inc
COMBINEDBrain is a consortium for outcome measures and biomarkers for neurodevelopmental disorders. We are collaborating to cure rare, non-verbal brain disorders.
Clinical Trials
For a list of clinical trials in this disease area, please click here.