These
links
are
for
informational
or
educational
use
only.
Inclusion
does
not
imply
endorsement
or
approval
by
the
Alpha-1
Association
of
any
organization
listed.
Program
Partners
The
Alpha-1
Foundation
(www.alphaone.org)The
Alpha-1
Foundation
is a
not-for-profit
organization
with
headquarters
in
Miami
dedicated
to
providing
the
leadership
and
resources
that
will
result
in
increased
research,
improved
health,
worldwide
detection,
and
a
cure
for
Alpha-1
Antitrypsin
Deficiency.
AlphaNet
(www.alphanet.org)
AlphaNet
is a
not-for-profit
health
management
company
providing
comprehensive
services
exclusively
to
the
Alpha
community.
Alpha-1
Research
Program
(http://www.alphaone.ufl.edu/)A
joint
venture
of
the
Alpha-1
Foundation
and
the
University
of
Florida,
the
A-1
research
program
is
constantly
adding
to
the
Alpha-1
body
of
knowledge.
Alpha-1
Kids
(www.alpha1kids.org)
Alpha-1
Kids
is
an
organization
developed
by
affected
families
and
their
physicians
to
provide
information,
support
and
awareness.
It
is
overwhelming
and
frightening
to
hear
that
your
child
is
Alpha-1
Antitrypsin
deficient,
but
they
hope
to
help
you
understand
what
the
diagnosis
means
to
you
and
your
family
through
current
information,
an
open
dialogue
with
professionals,
and
meeting
other
families
like
your
own.
Detection,
Prevention,
and
Management
AlphaNet's
Big
Fat
Reference
Guide
on
Alpha-1
Disease
Management
is
now
online.
Visit
their
newly
redesigned
website
at (www.alphanet.org)
Global
Initiative
for
Chronic
Obstructive
Lung
Disease
(www.goldcopd.com).
GOLD
is a
website
dedicated
to
effective
COPD
management
and
prevention,
increased
awareness
of
COPD,
and
decreased
morbidity
and
mortality
from
COPD.
International
Alpha-1
Organizations
and
Links
Alpha-1
Deutschland
(www.alpha1-deutschland.de)
Alpha-1
Canada
(www.alpha1canada.ca)
Alpha-1
Canada
is
committed
to
providing
information
to
people
affected
by
alpha-1antitrypsin
deficiency
(alpha-1)
and
to
generating
broad
awareness
about
this
genetic
liver,
lung
and
skin
disease.
La
Fundación
Alfa-1
de
Puerto
Rico
(www.alfa1.org)
Es
una
organización
sin
ánimos
de
lucro
que
tiene
como
misión
brindarle
apoyo
y
educación
a
todas
aquellas
personas
cuyas
vidas
han
sido
afectados
por
la
Alfa-1.
Informação
Alfa-1
em
Português
(www.alfa1.org/portugues_pagina_principal)
São
organizações
sem
ânimos
de
lucro
e
têm
como
missão
brindar-lhe
apoio
e
educação
a
todas
aquelas
pessoas
cujas
vidas
tenham
sido
afectadas
pela
Alfa-1.
Alpha-1
Ireland
(www.alpha1.ie)
Alpha
One
Foundation
(Ireland)
is a
clinical
research
and
patient
services
development
organisation.
The
main
focus
of
the
Foundation
is
to
research
and
develop
therapies
and
services
for
people
with
Alpha
1
deficiency
in a
national
centre
of
excellence
in
Beaumont
Hospital
and
to
develop/establish
a
clinical
services
network
throughout
Ireland
Alfa-1
Italia
(www.alfa1at.org)
L'Associazione
Nazionale
dei
pazienti
portatori
del
deficit
di
alfa1-antitripsina
(AAT).
Related
Patient
Advocacy
Organizations
American
Lung
Association
(www.lungusa.org)
The
Alpha-1
Association
originally
began
as a
subunit
of
the
ALA's
Better
Breathers
Groups.
American
Liver
Foundation
(www.liverfoundation.org).
ALF
provides
research,
education
and
advocacy
for
those
affected
by
liver
diseases
Children's
Liver
Disease
Foundation
(www.childliverdisease.org)
A
British
national
charity
dedicated
to
fighting
all
liver
diseases
of
childhood.
It
fights
by
funding
pioneering
research,
providing
education
and
giving
professional,
caring
support
to
the
families
and
patients.
National
Association
of
Hospital
Hospitality
Houses,
Inc.
(www.nahhh.org)
NAHH
is a
non-profit
corporation
serving
facilities
that
provide
lodging
and
other
supportive
services
to
patients
and
their
families
when
confronted
with
medical
emergencies.
National
Organization
for
Rare
Disorders,
Inc.
(www.nord.org)
A
federation
of
voluntary
health
organizations
dedicated
to
helping
people
with
rare
diseases.
Patient
Support
Resources
MUMS
National
Parent-to-Parent
Network
(www.netnet.net/mums/index.htm)
A
national
network
whose
mission
is
to
help
parents
who
have
a
child
with
any
disorder
make
connections
with
other
parents
whose
children
have
the
same
or
similar
condition.
COPD
ALERT
(www.copd-alert.com)
A
support
and
advocacy
group
for
people
living
with
COPD.
Children's
Liver
Association
for
Support
Services
[CLASS]
(www.classkids.org).
CLASS
is a
nonprofit
organization
dedicated
to
serving
the
emotional
and
financial
needs
of
families
coping
with
childhood
liver
disease
and
transplantation.
Airlifeline
(www.airlifeline.org)
Airlifeline
is a
national
volunteer
network
for
patient
air
transportation.
The
National
Patient
Air
Transport
Helpline
(www.patienttravel.org)
The
National
Patient
Air
Transport
Helpline
provides
information
about
all
forms
of
charitable,
long-distance
medical
air
transportation
and
provides
referrals.
Caringbridge
(www.caringbridge.org)
Caringbridge
is a
nonprofit
organization
that
offers
free
personalized
Web
pages
to
those
receiving
care.
You
can
use
it
to
keep
loved
ones
and
friends
up-to-date
on
treatment
and
condition.
Educational
Resources
Alpha-1
Antitrypsin
Deficiency
(www.nationaljewish.org/medfacts/alpha1.html).
An
educational
resource
provided
by
National
Jewish
Medical
and
Research
Center.
(See
also
www.nationaljewish.org/medfacts/medfacts.html).
Alpha-1
Antitrypsin
Deficiency
(www.emedicine.com/med/topic108.htm).
Discussion
of
the
disorder
by
Dr.
Paul
Fairman
at
emedicine.com.
Breathin'
Easy
(www.oxygen4travel.com).
This
is a
resource
provided
by
the
American
Association
of
Respiratory
Care.
It
provides
information
on
traveling
with
supplemental
oxygen.
Pulmonology
Links
(www.mdlinx.com/pulmonologylinx/index.cfm)
This
is a
healthcare
providers'
site
that
provides
information
on
lung
disease.
GastroHep
(www.gastrohep.com).
The
global
online
resource
for
all
aspects
of
gastroenterology,
hepatology
and
endoscopy.
Spiderspun
(www.spiderspun.net).
An
Alpha-1
haven.
Noreen
James,
one
of
A1A's
support
group
leaders,
has
put
together
this
awesome
informational
resource.
Your
Lung
Health
(www.yourlunghealth.com).
End
of
Life
Issues
and
Planning
AARP's
End
of
Life
Guide
(http://www.aarp.org/life/endoflife/).
Get
information
on
estate
planning,
powers
of
attorney,
hospice
and
palliative
care.
End-of-Life
Decision
Making
(http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=401).
This
guide
from
the
Family
Caregiver
Alliance
has
helpful
content
for
caregivers
and
patients
alike.
Department
of
Health
and
Human
Services'
Guide
to
End
of
Life
Planning
(http://www.cms.hhs.gov/providers/hospiceps/end_of_life.php).
This
guide
contains
lots
of
practical
information
about
how
to
get
one's
affairs
in
order.
Professional
Societies
of
Allied
Healthcare
Providers
American
College
of
Chest
Physicians
(www.chestnet.org).
The
American
College
of
Chest
Physicians
(ACCP)
is a
medical
specialty
society
of
professionals
who
specialize
in
diseases
of
the
chest.
American
Academy
of
Pediatrics
(www.aap.org).
The
professional
society
for
pediatricians.
AAP
publishes
the
medical
journal
Pediatrics
(www.pediatrics.aappublications.org).
American
Association
for
the
Study
of
Liver
Disease
(www.aasld.org).
AASLD
provides
a
"find
a
hepatologist"
search
feature
on
their
website,
as
well
as
publications
on
liver
disease
and
transplantation.
American
Thoracic
Society
(www.thoracic.org)
A
scientific
society
which
focuses
on
respiratory
and
critical
care
medicine.
Transplant
Links
United
Network
for
Organ
Sharing
(www.unos.org)
UNOS
assists
in
placing
donated
organs
for
transplantation.
They
serve
as
the
clearinghouse
to
the
transplant
community
regarding
organ-sharing
policies.
Transplant
Recipients
International
Organization
(www.trioweb.org)
TRIO
provides
transplantation
and
organ
donation
information
to
transplant
candidates,
recipients,
donors,
and
their
families.
Second
Wind
(www.2ndwind.org)
A
site
for
lung
transplant
recipients.
The
site
is
informative
and
provides
supplementary
information
that
makes
UNOS's
site
easier
to
understand.
Industry
Partners
Zemaira
(www.zemaira.com)
Alpha-1
replacement
therapy
from
ZLB
Behring
(www.zlbbehring.com)
Prolastin
(www.prolastin.com)
Alpha-1
replacement
therapy
from
Talecris
Biotherapeutics
(www.talecris.com).
Aralast
(www.aralast.com)
Alpha-1
replacement
therapy
from
Baxter
Healthcare
(www.baxter.com).
Please
note:
the
Alpha-1
Association
does
not
endorse
products.
Financial/Insurance
Assistance
ACCESS
(www.accredohealth.net/ati/access/access)
ACCESS
is a
program
of
Accredo
Therapeutics
(www.accredo.net).
Helps
educated
consumers
on
Social
Security
Disability,
Supplemental
Security
Income,
Medicare
and
Medicaid.
Insurance:
A
Consumers
Guide
to
Your
Rights
(www.healthinsuranceinfo.net)
A
Consumer
Guide
that
tells
you
how
to
buy
and
keep
health
insurance
in
each
state.
A
service
of
Georgetown
University
Institute
for
Health
Policy.
Financial
Help
for
Children
(www.cms.hhs.gov/medicaid/consumerfam.php)
Resources
from
the
government's
Centers
for
Medicare
and
Medicaid
Services.
Insure
Kids
Now
(www.insurekidsnow.gov)
A
program
of
the
Department
of
Health
and
Human
Services.
Kids
that
do
not
currently
have
health
insurance
are
likely
to
be
eligible
for
health
insurance,
even
if
the
parent
is
working.
Medicare
Assistance
(www.medicare.gov)
Government
resources
for
healthcare
and
prescription
assistance.
The
Medicine
Program
(www.themedicineprogram.com)
Free
prescription
medication
is
available
to
patients
who
qualify.
NeedyMeds.com
(www.needymeds.com).
NeedyMeds
offers
resources
designed
to
teach
about
patient
assistance
programs
and
other
programs
designed
to
help
those
who
can't
afford
their
medicines.
Patient
Services
Incorporated
(www.uneedpsi.org)
Offers
funding
to
Alphas
and
other
groups
to
help
cover
insurance
premium
cost
and
co-pays
for
those
on
augmentation
therapy.
Alpha-1
Community
Groups
and
Support
Lists
Alpha-1
International
Support
Mailing
List
Information
exchange,
sharing
and
support
for
all
alpha-1
patients
and
caregivers.
To
join,
send
an
e-mail
to
ALPHA-1-REQUEST@home.ease.lsoft.com.
Alpha-1
Lungs
&
Life
Mailing
List
A
social,
support
and
information
resource
for
people
with
lung
disease
caused
by
Alpha-1
Antitrypsin
Deficiency.
Anyone
with,
or
just
interested
in,
Alpha-1
is
welcome
to
join.
To
join,
send
an
e-mail
Alpha1_Lungs_and_Life-subscribe@yahoogroups.com
Alpha
Liver
E-Group
Help,
advice
and
support
for
people
and
families
affected
by
(or
anyone
who
has
an
interest
in)
Alpha-1
Antitrypsin
Deficiency
Liver
Disease.
To
join,
send
an
e-mail
to
ALPHA-LIVER-subscribe@egroups.com
Alpha
Liver
List
Information
exchange,
sharing
and
support
for
liver-affected
patients,
caregivers
and
family
members.
To
join,
send
an
e-mail
to:
ALPHA-LIVER-REQUEST@home.ease.lsoft.com
ALPHA-LIVER-REQUEST@home.ease.lsoft.com
Alpha-1
Network
Chat
Room
(http://communities.msn.com/Alpha1Network)
Talk
online
with
others
affected
by
Alpha-1.
The
chatroom
is
available
24
hours
a
day
but
most
active
during
the
evening
hours.
YoungLung
Online
Support
Group
(www.geocities.com/younglungz)
Provides
support
and
information
for
the
Teen
and
Young
Adult
Population
living
with
various
Chronic
Lung
Conditions.
Advocacy
and
Government
Patient
Notification
System
(www.patientnotificationsystem)
Sign
up
for
notification
of
Alpha-1
replacement
products
recall.
A
service
of
the
Plasma
Protein
Therapeutics
Association.
Food
and
Drug
Administration
(www.fda.gov)
The
regulatory
agency
that
processes,
approves
and
monitors
drugs
and
drug
safety
for
the
US
market.
FDA
Recall
Information
(www.fda.gov/cber/recalls)
Biologics
recalls
listings
National
Institutes
of
Health
(www.nih.gov)
NIH
is
the
steward
of
medical
and
behavioral
research
for
the
Nation.
It
is
an
Agency
under
the
U.S.
Department
of
Health
and
Human
Services.
Department
of
Health
&
Human
Services
(www.hhs.gov)
The
United
States'
principal
agency
for
protecting
the
health
of
Americans
and
providing
essential
human
services,
especially
for
those
who
are
least
able
to
help
themselves.
HHS
runs
over
3,000
programs.
House
of
Representatives
(www.house.gov)
Locate
and
contact
your
representative
in
the
US
Congress.
Senate
(www.senate.gov)
Locate
and
contact
your
senators
in
the
US
Congress.
U.S.
Department
of
Justice
(www.usdoj.gov/crt/ada/adahom1.htm)
Find
out
about
the
Americans
with
Disabilities
Act
Genetic
Information
and
Organizations
Genetic
Alliance
(www.geneticalliance.org)
Goal
is
to
increase
the
capacity
of
genetic
advocacy
groups
to
achieve
their
missions.
Genetics
Education
Center
(www.kumc.edu/gec)
University
of
Kansas
Medical
Center
has
put
together
an
extensive
range
of
resources
designed
to
educate
people
about
genetics.
Genetic
Information
and
Patient
Services,
Inc
(www.icomm.ca/geneinfo)
A
comparative
study
of
internet
information
concerning
genetic
disorders
and
birth
defects.
National
Human
Genome
Research
(www.genome.gov)
The
HGP
was
developed
in
collaboration
with
the
United
States
Department
of
Energy
(DOE)
and
begun
in
1990
to
map
the
human
genome.
Genetic
Counselors
(www.nsgc.org/resourcelink)
Find
a
Genetic
Counselor
in
your
area.
Current
Active
Chat
Room
Links
Name:
Spiderchat
(Spiderspun’s
chat
room)
Link:
http://www.spiderspun.net/chat.htm
Registration:
none
required
Who
can
chat:
anyone
affected
by
Alpha-1
(includes
caregivers,
family,
parents,
etc…)
User-friendly
to:
PC
users
or
WebTV
users
Open:
24/7
to
public
Specific
Topics:
go
to
link
for
specific
chat
times
Name:
Lung
TX
Chat
Room
Link:
http://groups.msn.com/TransplantSupportLungHeartLungHeart/chatschedule.msnw
Registration:
none
required
Who
can
chat:
those
affacted
by
lung
transplants
User-friendly
to:
PC
users
only
Open:
24/7
to
public
Specific
Topics:
go
to
link
for
specific
chat
times
Name:
The
Lung
Club
(MSN
group
chat)
Link:
http://groups.msn.com/thelungclub/_homepage.msnw?pgmarket=en-au
Registration:
yes
Who
can
chat:
members
only
User-friendly
to:
PC
users
only
Open:
24/7
to
members
only
Specific
Topics:
to
members
only
once
they
join
Information
on
Oxygen
Travel
Link:
http://www.sequal.com/Travel_connection.php
Sequal
is
the
manufacturer
of
the
Eclipse
POC.
I do
not
know
if
the
other
manufacturer’s
have
such
information
on
their
website,
but
as
you
can
see
from
this
one,
you
simply
click
on
the
Approved
Airline,
it
takes
you
to
that
airline’s
documentation
showing
approval,
a
patient
can
then
print
that
out
and
take
it
with
them
to
the
airport.
Many
of
our
patients
have
been
told
by
misinformed
airline
employees
that
a
particular
device
is
not
approved,
even
when
it
is
approved.
With
this
documentation
in
hand,
it
prevents
delays
in
boarding
for
our
patients.
Submit
a
link!
|
