Page 6 - HFA Annual Report 2013
P. 6
yeAr in revieW | ADVoCACY
i n 2013, hFA remained committed to changing or Highlights:
protecting policies to positively impact the needs
and quality of life for people with bleeding disor-
ders. hFA has, on an ongoing basis, raised public • Engaged state advocates at its member organizations in
and legislative awareness of the needs of the bleed- policy discussion through seven presentations at state
ing disorders community and actively collaborated meetings and monthly ongoing national conference calls.
with organizations to ensure that those needs are • Hosted 6 advocacy webinars.
met.
• Issued letters to congress and the administration on issues
hFA accomplished its 2013 organizational objec- such as funding for hemophilia programs, health care
tives by engaging policymakers on the state and fed- reform and access to care.
eral level in the areas of access to affordable and safe
therapies, appropriate and accurate data collection • Collaborated with other national organizations on joint
of the bleeding disorders community, and the mul- advocacy efforts including:
titude of issues around the implementation of the • American Plasma Users Coalition (APLUS)
Patient Protection and Affordable care Act (AcA). • Coalition for Accessible Treatment (CAT)
hFA increased engagement and community par- • Plasma Protein Therapeutics Association (PPTA)
ticipation in advocacy activities by utilizing social • National Organization for Rare Diseases (NORD)
media tools, including webinars, voices campaign,
Facebook, and twitter. hFA launched its weekly • National Hemophilia Foundation (NHF)
“Dear Addy” column to educate people across the • Committee of Ten Thousand (COTT)
country and to make advocacy personal. via “Dear • Created tools and print resources for advocates.
Addy,” community members are able to confiden-
tially ask questions and get them answered. • Enhanced content on HFA’s website to continue education
and understanding of key policy and issue areas.
• Implemented “Dear Addy”
educational feature on Dear Addy,
hFA website. What is a maximum-out-of-pocket
• Utilized social media tools expense and will it rise over time?
(Facebook and twitter) Signed,
Not-So-Deep-Pockets
to mobilize advocates.
i n 2013, hFA remained committed to changing or Highlights:
protecting policies to positively impact the needs
and quality of life for people with bleeding disor-
ders. hFA has, on an ongoing basis, raised public • Engaged state advocates at its member organizations in
and legislative awareness of the needs of the bleed- policy discussion through seven presentations at state
ing disorders community and actively collaborated meetings and monthly ongoing national conference calls.
with organizations to ensure that those needs are • Hosted 6 advocacy webinars.
met.
• Issued letters to congress and the administration on issues
hFA accomplished its 2013 organizational objec- such as funding for hemophilia programs, health care
tives by engaging policymakers on the state and fed- reform and access to care.
eral level in the areas of access to affordable and safe
therapies, appropriate and accurate data collection • Collaborated with other national organizations on joint
of the bleeding disorders community, and the mul- advocacy efforts including:
titude of issues around the implementation of the • American Plasma Users Coalition (APLUS)
Patient Protection and Affordable care Act (AcA). • Coalition for Accessible Treatment (CAT)
hFA increased engagement and community par- • Plasma Protein Therapeutics Association (PPTA)
ticipation in advocacy activities by utilizing social • National Organization for Rare Diseases (NORD)
media tools, including webinars, voices campaign,
Facebook, and twitter. hFA launched its weekly • National Hemophilia Foundation (NHF)
“Dear Addy” column to educate people across the • Committee of Ten Thousand (COTT)
country and to make advocacy personal. via “Dear • Created tools and print resources for advocates.
Addy,” community members are able to confiden-
tially ask questions and get them answered. • Enhanced content on HFA’s website to continue education
and understanding of key policy and issue areas.
• Implemented “Dear Addy”
educational feature on Dear Addy,
hFA website. What is a maximum-out-of-pocket
• Utilized social media tools expense and will it rise over time?
(Facebook and twitter) Signed,
Not-So-Deep-Pockets
to mobilize advocates.
