For these diseases, a disability certificate with no validity period is available LIST

• The Ministry of Family, Labor and Social Policy has announced important changes in the procedures for issuing disability certificates.
• Guidelines have been created for adjudicating teams on issuing decisions without a validity period, i.e. permanently
• Two lists of diseases for which such a decision can be issued have also been developed. The first one contains 150 diseases, the second 58.

MRPiPS reminded that the essence of the current disability assessment system is to assess whether a given person's health condition prevents them from fulfilling specific social roles on an equal basis with other people. It is important whether the health condition, according to current medical knowledge, gives a chance for improvement, as well as how the person functions in their local environment.

The social side has repeatedly pointed out that many people suffering from rare diseases or Down Syndrome, for example, face misunderstanding in adjudicating teams. - There were situations in which it was considered that the health condition of these people could improve, despite other opinions presented by specialists in the field of clinical genetics - indicated the ministry.

In response, Deputy Minister of Family Łukasz Krasoń issued recommendations for the Provincial and District Disability Assessment Teams.

• People suffering from nearly 150 rare diseases, if they contact these teams and document their condition, will receive a permanent disability certificate (in the case of children up to 16 years of age) taking into account points 7 and 8 of the certificate.
• Point 7 means the need for constant or long-term care or assistance from another person due to the significantly limited possibility of independent existence, and point 8 - the need for constant, everyday participation of the child's guardian in the process of his or her treatment, rehabilitation and education).
• In the case of children with Down syndrome and those suffering from 50 other rare diseases, a similar recommendation was issued regarding decisions issued for the maximum possible period (up to 16 years of age) and the need to apply point 7 of the decision.

What does an indefinite disability certificate provide?

The granting of a ruling to such persons is associated with the guarantee of:

• care benefits,
• care allowance,
• tax relief (e.g. the possibility of deducting care expenses under the rehabilitation relief);
• priority access to social and care services;
• facilities for accessing health services - e.g. rehabilitation,
• sanatorium treatment,
• the right to a Parking Card; additional support in education (the possibility of obtaining an assistant at school or an individual course of study).

In these diseases, a permanent disability certificate is issued

The guidelines with a detailed list of diseases were received from the Ministry of Family, Labor and Social Policy and published by Prawo.pl. The website emphasizes that they do not have statutory status, but are merely indications that a medical expert may use.

• Conditions , in the case of confirmation for which the assessed child is justified in qualifying as disabled with the indication established in point 7 - the need for constant or long-term care or assistance from another person due to the significantly limited possibility of independent existence and the indication established in point 8 - the need for constant daily participation of the child's guardian in the process of his/her treatment, rehabilitation and education for the period until he/she reaches 16 years of age:

1. Achondroplasia
2. Aicardi-Goutières Syndrome
3. Alpha 1 antitrypsin deficiency - homozygous form
4. Alpers-Huttenlocher Syndrome
5. Alpha- and beta-mannosidosis
6. Alström's Syndrome
7. Angelman Syndrome
8. Apert Syndrome
9. Aromatic L-amino acid decarboxylase deficiency
10. Ataxia telangiectasia
11. Autosomal recessive polycystic kidney disease
12. Autosomal recessive malignant osteopetrosis
13. Bardet-Biedl Syndrome
14. R4 Limb-girdle muscular dystrophy associated with beta-sarcoglycan
15. CHARGE Team
16. Calpain-3 R1-related limb-girdle muscular dystrophy
17. Campomelic dysplasia
18. Canavan disease
19. Heller's Syndrome (Childhood Disintegrative Disorder, CDD)
20. Cockayne Team
21. Coffin-Lowry Syndrome
22. Congenital absence of arm and forearm
23. Congenital disorder of glycosylation
24. Congenital muscular dystrophy with alpha-7 integrin deficiency
25. Cornelia de Lange's Team
26. Cystic fibrosis
27. Dravet syndrome (SCN1A-related)
28. Dubowitz Syndrome
29. Duchenne muscular dystrophy
30. Simple epidermolysis bullosa
31. Fetal akinesia deformational sequence
32. Fragile X Syndrome
33. Fraser Syndrome
34. Friedreich's ataxia
35. Fryns's Syndrome
36. GM1 Gangliosidosis
37. GM2 Gangliosidosis
38. Gaucher's disease
39. Glycine encephalopathy (nonketotic hyperglycinemia)
40. Underdevelopment of the distal part of the limb/limbs, hemimelia
41. Holoprosencephaly
42. Hutchinson-Gilford Progeria Syndrome
43. Hydrocephalus with stenosis of the aqueduct of Sylvius
44. Hyperphenylalaninemia caused by tetrahydrobiopterin deficiency
45. Hereditary epidermolysis bullosa
46. Smooth brain - a congenital defect of the central nervous system
47. Isolated anencephaly/exencephaly
48. Isolated open spina bifida
49. Isovaleric acidosis
50. Huntington's disease, juvenile form
51. Kabuki Team
52. Krabbe disease
53. Kyphoscoliotic type of Ehlers-Danlos syndrome
54. Congenital muscular dystrophy due to lamin alpha 2 deficiency, merosin-negative congenital muscular dystrophy
55. Larsen's Syndrome
56. Leber's congenital amaurosis
57. Leber's hereditary optic atrophy
58. Leber's disease "plus"
59. Leigh's Syndrome
60. Lesch-Nyhan Syndrome
61. Maternal phenylketonuria with microcephaly
62. Meckel's Syndrome
63. Menkes disease
64. Metachromatic leukodystrophy
65. Miller-Dieker Syndrome
66. Mitochondrial Membrane Protein-Related Neurodegeneration
67. Niemann-Pick disease type A
68. Niemann-Pick disease type B
69. Niemann-Pick disease type C
70. Team Nijmegen
71. Noonan Team
72. Ohtahara's Syndrome
73. Congenital brittle bone disease
74. Congenital osteogenesis imperfecta with deformities
75. Pelizaeus-Merzbacher disease
76. Pompe disease
77. Prionopathies (familial)
78. Rett Syndrome
79. Refsum's disease
80. Rubinstein-Taybi Syndrome
81. Sandhoff Syndrome
82. Smith-Lemli-Opitz syndrome
83. Smith-Magenis Syndrome
84. Sturge-Weber syndrome
85. Tarui's Team
86. Timothy's Team
87. Tuberous sclerosis
88. Tay-Sachs disease
89. Treacher Collins Syndrome
90. Turcotte's Syndrome
91. Usher Syndrome
92. VATER/VACTERL Team
93. Waardenburg Syndrome
94. Warburg Syndrome
95. Williams Team
96. Wolf-Hirschhorn Syndrome
97. Wilson's disease
98. Zellweger Syndrome
99. Zollinger-Ellison syndrome
100. Prader-Willi syndrome
101. Kabuki Syndrome with a mutation in KDM6A
102. Kabuki Syndrome with a KMT2D Mutation
103. Angelman Syndrome Associated with UBE3A Mutation
104. Smith-Magenis syndrome with deletion 17p11.2
105. Smith-Magenis syndrome with RAI1 mutation
106. Cri du chat team
107. Trisomy 13 (Patau syndrome)
108. Trisomy 18 (Edwards syndrome)
109. Trisomy 21 (Down syndrome)
110. Turner Syndrome
111. Klinefelter's Syndrome
112. Coffin-Siris Syndrome
113. Cornelia de Lange Syndrome with SMC1A Mutation
114. Cornelia de Lange Syndrome with SMC3 Mutation
115. Cornelia de Lange Syndrome with RAD21 Mutation
116. Cornelia de Lange Syndrome with NIPBL Mutation
117. Cornelia de Lange Syndrome with HDAC8 Mutation
118. Cri-du-chat team (5p minus)
119. Wolfram Syndrome
120. Joubert Syndrome
121. Alagille Syndrome
122. Hermansky-Pudlak syndrome
123. Kartagener's Team
124. Leigh syndrome (mitochondrial form)
125. Mitochondrial encephalopathy (MELAS)
126. Mitochondrial myopathy
127. Kearns-Sayre Syndrome
128. Leigh disease (SURF1 mutation)
129. Mitochondrial disease with a mutation in mtDNA
130. Mitochondrial encephalopathy with POLG mutation
131. Mitochondrial myopathy with TK2 mutation
132. Aarskog's Team
133. Classic Ehlers-Danlos Syndrome
134. Vascular Ehlers-Danlos syndrome
135. Marfan Syndrome
136. Loeys-Dietz Syndrome
137. Stickler's Syndrome
138. Shprintzen-Goldberg syndrome
139. Diastrophic dysplasia
140. Osteogenesis imperfecta type III
141. Osteogenesis imperfecta type IV
142. Ellis-van Creveld Syndrome
143. Achondrogenesis
144. Hypochondroplasia
145. Thanatophoric dysplasia
146. Emery-Dreifuss muscular dystrophy
147. Late-onset muscular dystrophy
148. Thomson's congenital myotonia
149. Nemaline myopathy
150. Kabuki Syndrome with MLL2 Mutation

• Conditions , in the case of confirmation for which the assessed child is deemed to be entitled to disability status, with the indication provided for in point 8 - the need for constant, everyday participation of the child's guardian in the process of his or her treatment, rehabilitation and education for the period until he or she reaches 16 years of age.

1. 22q11.2 Microdeletion Syndrome (DiGeorge Syndrome)
2. Congenital polyarticular stiffness, arthrogryposis
3. Autosomal dominant cerebellar ataxia
4. Autosomal recessive cerebellar ataxia
5. Barth's Syndrome
6. Cardio-facio-cutaneous syndrome (CFC)
7. Carnitine palmitoyltransferase (CPT) deficiency
8. Charcot-Marie-Tooth disease (hereditary sensory and motor neuropathy)
9. Classical galactosemia
10. Classic homocystinuria
11. Congenital chlorotic diarrhea
12. Congenital hydrocephalus
13. Congenital myasthenic syndrome
14. Segawa's disease, dystonia with good response to L-DOPA
15. Emery-Dreifuss muscular dystrophy
16. FKRP-related limb-girdle muscular dystrophy
17. Gamma-sarcoglycan-related limb-girdle muscular dystrophy
18. Glutaryl-coenzyme A dehydrogenase deficiency (Glutaric acidemia type 1)
19. Glycogen Storage Disease GSD
20. Hartnup disease
21. Hemophilia A, severe form
22. Hereditary angioedema
23. Hereditary spastic paraplegia
24. Holocarboxylase synthetase deficiency
25. Incontinence of pigment - Bloch-Sulzberger syndrome
26. Thoracic constriction dysplasia - Jeune's syndrome
27. Johanson and Blizzard Team
28. Joubert Syndrome and Related Disorders
29. Long-chain fatty acid dehydrogenase 3-hydroxyacyl CoA deficiency
30. Mitochondrial encephalopathy, lactic acidosis with stroke-like episodes - MELAS syndrome
31. Medium Chain Acyl-CoA Dehydrogenase Deficiency
32. Microphthalmia-aphthalmia syndrome
33. Gastrointestinal mitochondrial encephalomyopathy
34. Mitochondrial oxidative phosphorylation disorder due to mitochondrial DNA abnormalities
35. Trifunctional mitochondrial protein deficiency
36. Multiple system atrophy
37. Parkinson's type multiple system atrophy
38. Orofacial-digital syndrome type 1
39. Pfeiffer's Syndrome
40. Phenylketonuria
41. Childhood-onset spinocerebellar ataxia
42. Steinert's myotonic dystrophy
43. Tracher-Collins Syndrome
44. Tuberous sclerosis
45. Tyrosinemia type 1
46. Werner's Syndrome
47. Early onset Parkinson's disease
48. Loeys-Dietz syndrome
49. Borjeson-Forssman-Lehmann syndrome
50. Sensenbrenner Team
51. Arnold-Chiari syndrome type 1
52. Fanconi's anemia
53. Allagille Syndrome
54. Maple syrup urine disease
55. Hypophosphatasia
56. Pompe Syndrome
57. X-linked hypophosphatemic rickets
58. Freeman-Sheldon Syndrome

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