Similares a HAE advocate Ben shares what it’s like living with a rare disease.

20 vecinos (text_768) · 581 views · Bionews · Estados Unidos


★	HAE advocate Ben shares what it’s like living with a rare disease.	Bionews @bionews_rare	581	Estados Unidos
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15	Living with a rare disease can deeply impact your mental health.	Bionews @bionews_rare	1.3K	Estados Unidos	86
18	My SMA is complex and requires complex care.	Bionews @bionews_rare	1.2K	Estados Unidos	86
7	Hemophila advocate Tracye Hamler shares self care advice with a rare disease.	Bionews @bionews_rare	916	Estados Unidos	87
2	A little late-night Googling led him to hereditary angioedema.	Bionews @bionews_rare	836	Estados Unidos	88
6	Life of a Rare Disease Advocate - NORD ft. Swifties	National Organization for Rare Disorders (NORD) @raredisorders	562	Estados Unidos	87
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17	Kelly shares how important it is to raise awareness for rare diseases!	Bionews @bionews_rare	379	Estados Unidos	86
5	Advocacy can light a fire, but it also takes a physical toll.	Bionews @bionews_rare	169	Estados Unidos	87
1	We’re highlighting the reality of navigating mental health while living with a rare disease	Bionews @bionews_rare	165	Estados Unidos	88
3	Curious about how other people impacted by rare diseases deal with relationships, work, school...	Bionews @bionews_rare	149	Estados Unidos	87
16	We Are Raising Awareness of the Need for Equity in the Rare Disease Community	Pfizer @pfizer	147	Estados Unidos	86
19	Rare Faces of Medicaid: Paige	National Organization for Rare Disorders (NORD) @raredisorders	122	Estados Unidos	86
10	Sometimes the person caring for you understands more than you realize.	Bionews @bionews_rare	100	Estados Unidos	87
9	Accessibility shouldn’t require experience — yet so many only see the gaps.	Bionews @bionews_rare	93	Estados Unidos	87
12	Hemophilia advocate Tracye Hamler shares with us lessons a rare disease can teach you.	Bionews @bionews_rare	84	Estados Unidos	86
4	Mental health living with a rare disease.	Bionews @bionews_rare	56	Estados Unidos	87
20	Sebetralstat & Quality of Life in Breakthrough HAE \| Daniel Soteres, MD	HCPLive @hcplivenews	29	Estados Unidos	86
13	Fair For Rare: Why Access to Treatment is important	Rare Voices Australia @rarevoicesaustralia2025	0	Australia	86
14	Adaptive Sports and Recreation for Rare and Chronic Conditions with Abbey Hauser	Our Odyssey @ourodyssey123	0	Estados Unidos	86