Part,  Chapter, Paragraph

 1   II,     5.  3.  8|               a long list of distinct rare diseases, each requiring a different
 2   II,     5.  3.  8|           being one disease into many rare diseases, requiring each a different
 3   II,     5.  5.  3|            been included in both the ‘Rare Diseases’ and ‘Major and Chronic
 4   II,     5.  5.  3|        spectrum can be categorised as rare diseases, there is an argument for
 5   II,     5. 11.  3|                see also Chapter 7 on “Rare Diseases”).~ ~Skin cancers~Melanoma
 6   II,     5. 15    |                                 5.15. RARE DISEASES~ ~
 7   II,     5. 15.Acr|          Disorders~OD~Orphan Drugs~RD~Rare Diseases~ ~
 8   II,     5. 15.  1|                1978) stating that all rare diseases have common problems: a
 9   II,     5. 15.  1|            public health dimension of rare diseases was recognised by the European
10   II,     5. 15.  1|               outpatient care.~ ~Most rare diseases are life-threatening and
11   II,     5. 15.  1|            Dystrophy. Some other very rare diseases are known to the general
12   II,     5. 15.  1|              5 000 and 8 000 distinct rare diseases, affecting maybe around
13   II,     5. 15.  1|              rare disease is limited, rare diseases collectively are a true
14   II,     5. 15.  2|              are listing thousands of rare diseases: OMIM and Orphanet, plus
15   II,     5. 15.  2|             Orphanet is a database of rare diseases which was established in
16   II,     5. 15.  2|             Italian National Register Rare Diseases, which collects data from
17   II,     5. 15.  3|             registries.~ ~Today, most rare diseases registries monitor a single
18   II,     5. 15.  3|          evaluate the total burden of rare diseases on the population, it is
19   II,     5. 15.  3|        systems that would include all rare diseases. For that purpose, a special
20   II,     5. 15.  3|       specific list of 2 138 specific rare diseases subject to systematic registration
21   II,     5. 15.  3|              main one is that not all rare diseases are included in the list.
22   II,     5. 15.  3|          unmet medical needs”.~ ~Most rare diseases are mendelian genetic disorders
23   II,     5. 15.  3|           recessively determined very rare diseases is therefore dependant on
24   II,     5. 15.  4|            treat, prevent or diagnose rare diseases. Commission Regulation No
25   II,     5. 15.  4|              to develop medicines for rare diseases. This committee is responsible
26   II,     5. 15.  4|          Health established in 2004 a Rare Diseases Task Force to advise and
27   II,     5. 15.  4|              on all issues related to rare diseases.~ ~In November 2008, the
28   II,     5. 15.  4|            adopted a Communication on Rare Diseases: Europe’s challenges (available
29   II,     5. 15.  4|                care, and research for rare diseases in Europe. It promotes the
30   II,     5. 15.  4|         recognition and visibility of rare diseases; support policies on rare diseases
31   II,     5. 15.  4|    rare diseases; support policies on rare diseases in the EU Member States;
32   II,     5. 15.  4|      coordination, and regulation for rare diseases; ensure empowerment and
33   II,     5. 15.  4|       European action in the field of rare diseases (COM(2008) 726 final). This
34   II,     5. 15.  4|         Community action programme on rare diseases, including genetic diseases,
35   II,     5. 15.  4|             protection in relation to rare diseases. As a first EU effort in
36   II,     5. 15.  4|     information about these diseases. Rare diseases are still one of the priorities
37   II,     5. 15.  4|               information networks on rare diseases, and the development of
38   II,     5. 15.  4|            rare disease or a group of rare diseases (Cystic Fibrosis, Rare bleeding
39   II,     5. 15.  4|             major diseases, including rare diseases to improve the prevention
40   II,     5. 15.  4|       research resources for tackling rare diseases. The funded research projects
41   II,     5. 15.  5|              at the European Council, rare diseases diagnosis and patient care
42   II,     5. 15.  5|              services in the field of rare diseases, including the set up of
43   II,     5. 15.  5|             The rise of attention for rare diseases is also witnessed by a recent
44   II,     5. 15.  5|             partnership with National Rare Diseases Alliances have organised
45   II,     5. 15.  5|               2008 the First European Rare Diseases Day. The event (which will
46   II,     5. 15.  5|               national initiatives on rare diseases.~(see: htt 93 and http ~ ~
47   II,     5. 15.  6|             condemning the victims of rare diseases to death? A call for a national
48   II,     5. 15.  6| Lilitkarntakul P, Webb DJ (2006): Are rare diseases still orphans or happily
49   II,     5. 15.  6|             networks of reference for rare diseases in Europe. Available At:~htt m (
50   II,     5. 15.  6|             05.2007)~Eurordis (2005): Rare diseases: understanding this public
51   II,     5. 15.  6|               dozen years of treating rare diseases. N Engl J Med. 2006 Feb
52   II,     5. 15.  6|             445-7.~Holzman NA (1978): Rare diseases, common problems: recognition
53   II,     5. 15.  6|            604, 2007~NORD database of rare diseases. Available at: htt l (accessed
54   II,     5. 15.  6|            2007)~Orphanet database of rare diseases and orphan drugs. Available
55   II,     5. 15.  6|               learned from studies on rare diseases and orphan drugs. J Intern
56   II,     6.  3.  7|          filoviridae family. Both are rare diseases, but have potentially high
57   II,     9.  1.  2|               public health agendasrare diseases, peri-natal and child health,
58   II,     9.  1.  2|       European information system for rare diseases. The added value of European
59   II,     9.  1.  2|             or disease entities. Most rare diseases (see Chapter 5.15) are congenital.
60   II,     9.  5.  2|         related Prevention Programme, Rare Diseases and Injuries and Accidents).~
61  III,    10.  2.  4|             European Organisation for Rare Diseases~HiaP~Health in all Policies~
62  III,    10.  2.  4|         Orphanet~European Database of Rare Diseases and Orphan Drugs~PHG~Public
63  III,    10.  2.  4|           disorders (see Chapter 7 on Rare Diseases). These diseases are monogenic
64  III,    10.  2.  4|              in European populations. Rare diseases require a specific infrastructure
65  III,    10.  2.  4|     unjustified. Only in the field of rare diseases most of the arguments of
66  III,    10.  2.  4|               special policy needs of rare diseases; further legislative work
67   IV,    11.  2.  2|          health monitoring, injuries, rare diseases and pollution-related diseases.
68   IV,    12.  1    |        quality of care, and research.~Rare diseases~The aim of the programme
69   IV,    12.  1    |      programme was to develop work on rare diseases. Specific attention was
70   IV,    12.  4    |               for example on tackling rare diseases;~· health technology assessment,
71   IV,    12. 10    |               health and environment, rare diseases, quality of life of patients
72   IV,    12. 10    |            adopted.~Draft programm on rare diseases is presently under public
73   IV,    13.Acr    |          health monitoring, injuries, rare diseases and pollution-related diseases.
74   IV,    13.  5    |               for example on tackling rare diseases;~· health technology assessment,
75  Key,   Ap5.  0.  0|            radioactive~radon~rainfall~rare diseases~rash~recommendation~recovery~