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Genetic Neuromuscular Diseases in Libya.
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Dear Editor:Whereas in previous decades the landscape for certain disorders such
as cancer and genetic diseases, in particular neuromuscular, was bleak, a glimmer of
hope has now arisen. This glimmer is growing fast into a beam that promises to shine
light over the coming decades. Genetic therapy has finally arrived.I wish to shed light
on the prospects in our location here in Libya: what has been done so far and what
remains to be done. Our experience over the last 4 years will also be outlined. The
reader will find that we have much to be proud of, and yet the challenges have been
sometimes seemingly insurmountable.The scientific committee for genetic neuromuscular
diseases (NMDs) was instituted in Libya four years ago. (1) Members include adult and
pediatric neurologists’ representatives from most of the main cities of Libya as well as
legal, pharmacist, and administrative members. It is part of the Libyan Program for
Neuromuscular Diseases, which includes the Patient Neuromuscular Society. Thus, Libya
has made considerable progress in the promotion of patient advocacy for these
conditions. The neurologist members of the scientific committee are the heads of
subcommittees formed in the city or city location to which they belong. Thus, a network
covering all of Libya has been formed. The main concept overriding this organization is
teamwork. Patients attend the subcommittee clinics to be assessed, tested genetically,
counselled, treated, and followed up. Accurate statistics can be obtained regarding
these diseases’ incidence and prevalence in Libya. A national patient database is now
the next aim.
Title: Genetic Neuromuscular Diseases in Libya.
Description:
Dear Editor:Whereas in previous decades the landscape for certain disorders such
as cancer and genetic diseases, in particular neuromuscular, was bleak, a glimmer of
hope has now arisen.
This glimmer is growing fast into a beam that promises to shine
light over the coming decades.
Genetic therapy has finally arrived.
I wish to shed light
on the prospects in our location here in Libya: what has been done so far and what
remains to be done.
Our experience over the last 4 years will also be outlined.
The
reader will find that we have much to be proud of, and yet the challenges have been
sometimes seemingly insurmountable.
The scientific committee for genetic neuromuscular
diseases (NMDs) was instituted in Libya four years ago.
(1) Members include adult and
pediatric neurologists’ representatives from most of the main cities of Libya as well as
legal, pharmacist, and administrative members.
It is part of the Libyan Program for
Neuromuscular Diseases, which includes the Patient Neuromuscular Society.
Thus, Libya
has made considerable progress in the promotion of patient advocacy for these
conditions.
The neurologist members of the scientific committee are the heads of
subcommittees formed in the city or city location to which they belong.
Thus, a network
covering all of Libya has been formed.
The main concept overriding this organization is
teamwork.
Patients attend the subcommittee clinics to be assessed, tested genetically,
counselled, treated, and followed up.
Accurate statistics can be obtained regarding
these diseases’ incidence and prevalence in Libya.
A national patient database is now
the next aim.
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