February 19, 2020 at 11:13 am #23058Charlene MarshallKeymaster
Did you know that the number of Americans diagnosed each year with idiopathic pulmonary fibrosis (IPF) is comparable to that of breast cancer? Yet I am constantly hearing: “you have what?”, “what is the lung disease you have called again?” It seems that so few people are familiar with IPF and the impact this disease has on all of us patients, caregivers, friends and family members.
Rare Disease Day is an initiative founded in 2008 with the objective of raising awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day 2020 is coming up on February 29th, and we’re asking all of you to participate!
- Participate by telling others about IPF/PF: it is time others know more about this disease and the impact it has on our lives.
- Share the Rare Disease Day content on your personal social media pages. There is an abundance of images, content and information you can share by visiting rarediseaseday.org
- Demand more research aimed at finding a cure, or helping patients improve their quality of life.
- Get Loud: we’re not alone in this journey and making others aware of IPF is only going to help people get diagnosed sooner, hopefully living longer lives due to early intervention.
- Use the hashtag: #WHATMAKESMERAREPF on social media.
I will be in California on Rare Disease Day with another fierce PF advocate and Respivant, who have launched phase 2 of the SCENIC trial to address the chronic IPF cough. We’re currently brainstorming different initiatives to help highlight Rare Disease Day and bring awareness to IPF. Stay tuned on what we come up with!
How will you highlight Rare Disease Day among your networks and raise the profile of IPF/PF?
February 19, 2020 at 12:41 pm #23071Taleena KochParticipant
We ALL need to be loud! Speak out! The best way to raise awareness about PF is to be active in talking to everyone you know. Your voice may help someone in getting an early diagnosis for them or their loved one. #LIVEwithPF #WHATMAKESMERAREPF #RareDiseaseDay
February 22, 2020 at 8:16 am #23092Charlene MarshallKeymaster
Completely agree Taleena!
I hope all the folks on this forum commit to doing one thing on Rare Disease Day 2020 to help highlight IPF/PF awareness. We can make such a difference. See you soon!
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