The List of Rare Diseases Has Been Supplemented

The Ministry of Health has approved changes to the List of Rare (Orphan) Diseases which Shorten Life of Patients or Lead to Disability and for Which There Are Recognized Methods of Treatment (hereinafter - the List). The corresponding Order of the Ministry of Health of Ukraine No. 731 as of June 29, 2017 has been registered with the Ministry of Justice.

Rare endocrine diseases, digestive disorders and metabolic disorders, as defined in Section I, have been supplemented with following 7 new positions: impaired ornithine metabolism, argininemia, ornithine carbamoyltransferase deficiency; impaired glycine metabolism; other disorders of lipid accumulation, Wolman's disease; hereditary erythropoietic porphyria; late cutaneous porphyria; other porphyrias; lipomatosis which was not classified elsewhere.

Section IV list “Rare Diseases of the Nervous System” has been supplemented with 10 positions, which include the following:

- encephalitis, myelitis and encephalomyelitis; encephalitis, myelitis and encephalomyelitis together with diseases classified in other sections; progressive encephalomyelitis with rigidity and myoclonus;

- secondary parkinsonism caused by other external factors;

- other forms of secondary parkinsonism;

- dystonia;

- craniocervical dystonia spreading to the larynx and upper limbs;

- blepharospasm;

- other dystonia;

- unspecified dystonia;

- specific epileptic syndromes;

- hereditary motor and sensory neuropathy.

Also, the List has been amended with Section XI “Rare Diseases of Sclera, Cornea, Iris and Ciliary Body”, containing 2 points: interstitial (stromal) and deep keratitis (Kogan syndrome), and iridocyclitis.