Help us to help more people
  2. Hermansky-Pudlak syndrome
  3. Advice
Being a part of the HPS Network. I feel empowered and I've learned enough about HPS to advocate for my needs.
by Heather
oxygène
by Audrey
Have been diagnosed with Pulmonary Fibrosis in August 2018
by allenhayes
Pulmonary rehabilitation. I am currently waiting for a lung transplant. This has been a huge part of keeping me ready for the surgery and active. I feel worse when I have to miss a session.
by Heather
Relatively stable and litle progression
by allenhayes
Being aware of the medications, foods and supplements that can affect bleeding.
by Heather
A pain being on Oxygen 24/7!
by allenhayes