Director of Membership at the National Organization for Rare Disorders. My sister @flippymomof3 has pulmonary hypertension (rare pulmonary disease, dx 1998).
Does someone in your family live with a #raredisease?
Need support?
Curious about what others do to support their loved ones and stay sane?
Listen in on a @RareDiseases virtual event for National Family Caregivers Month:
https://t.co/LsM0R0nTny
“when you join NORD @RareDiseases, you get a whole new group of friends who just get it.”
-Pam Mace, RN, Executive Director of @FMDartery
I just got a shout out from @pdmace2 at #LivingRareForum 😊
“I worked with NORD @RareDiseases to get my rare disease listed… we now have 17 registry centers in the united states doing research on this disease… one person can make a huge difference and I want to provide hope”
At @RareDiseases event in Cleveland, rare kids are VIP rock stars!
I love the literal red carpet roll out for children living w #rarediseases and their siblings.
#LivingRareForum
“in a world full of definitions, be undefined. I have a rare disease but I am not my rare disease.”
-Kyle Underwood, MHA, speaking of resilience at #LivingRareForum
1. Find your PEOPLE
2. Keep being PERSISTENT
3. PRIORITIZE your passions
4. Choose to think POSITIVE
5. PAUSE and consider other people’s PERSPECTIVES
Words to live by shared by Sarah Tobias, keynote speaker at #LivingRareForum.
Marshall Summar MD, @genedocrare is not only the Director of the @raredisease Institute at @ChildrensNatl Hospital…
he is a round-the-clock fighter for rare disease patients and their families!
Super busy, he travelled to Cleveland to support #LivingRareForum