Boost Your Own Awareness: Host an In-Touch Meeting
National Porphyria Awareness Week is March 29-April 5
Looking for a way to get involved? Host a meeting
with other APF members, friends and family. Local APF
member meetings are a great way to meet and share stories
with other porphyria people in your area, and hosting a
meeting is a lot easier than you think and becoming a member of the APF is easier
than you think.
Living with a rare disease can be lonely and frustrating. Doctors
will
talk with you about the symptoms of porphyria and suggest
lifestyle
changes, but they can't predict how the disease will affect
you. Family
and friends are essential support, but few of them will have
shared your
experience. Talking with other members can help you
sort out your own
perspective on living with porphyria while you learn more
about the
disease.
If organizing a meeting alone seems overwhelming, have
no fear. Ask a
friend or relative to share the hosting duties. The APF will
take care
of some of the preparations for you:
- Finding APF members in your area
- Sending out invitations
for you
- Collecting the RSVPs
Of course you can do extra work to make your meeting memorable,
but in the end, most people who come will be grateful just
for the opportunity to talk. All you
really need to do is open the door when folks show up.
Contact Elizabeth at the APF to get started and learn what
you can do to
make your meeting a success.
Toll Free: 1-866-APF
3635 or elizabethapf@aol.com
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