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    • #24819
      Colleen Steele
      Keymaster

      The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S.. Here is link for more information. Let us know if reach out to them and what your experience was like.

      NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

      Are there any resources you know of that can help your PH family during the COVID-19 pandemic?

    • #24820
      Jen Cueva
      Moderator

      Thanks, @colleensteele. I have shared this with Shannon and others who are not members. This is a fantastic support to not only those within the PH communities but all of the rare disease communities.

      So many have been affected by COVID-19. I am sure that many will benefit from this fund. Do y’all know of any other financial assistance programs that may be within your local community?

      I shared a few weeks back, a link to PHA, and their financial assistance links. In my local area, the food banks and churches have been showing long lines, but so many people benefit from the food programs that they offer.

      Have y’all experienced any of these financial assistance funds during COVID-19? If so, were you in long lines or on hold via phone to get access to the support?

    • #24871
      V.R. Peterson
      Participant

      This isn’t specific to COVID-19, but Pulmonary Hypertension Association has a site with many of the organizations that provide financial help for PH patients. There is both medical and non-medical help available.

      Help

    • #24873
      Colleen Steele
      Keymaster

      Thank you @mamabear007. It’s helpful to have various sources on hand to turn to for assistance. I hope our members who need it can find the help that they need.

    • #24881
      Jen Cueva
      Moderator

      Thanks, @mamabear007. I love the financial resource page at PHA. I shared this several weeks ago, as I thought many are unaware of these resources. I often share this list with my PHriends who are having difficulties trying to pay for the expensive medications. It is also a helpful resource when one is going through a rough patch and needs a little extra help,

      Which medications were your son on? He had PTE surgery, correct? Sorry, I have such a difficult time remembering everyone’s information. I know that all of them are quite costly.

    • #24884
      V.R. Peterson
      Participant

      @jenc, yes, my son had PTE surgery. Before surgery, he was on Remodulin SQ, Opsumit, Adempas, and oxygen. Immediately after surgery (even before he woke up) they stopped all medications. Three months after surgery, he stopped daytime O2, and by 6 months he was 100% off oxygen. About a year after surgery, his doctor put him on Sildenafil, but that has fewer side effects than the other.

      Don’t worry about not remembering everybody’s information. Too many people and too much information for one person to remember. 🙂

    • #24893
      Jen Cueva
      Moderator

      Hi @mamabear007, wowzers, I know that was an expensive treatment plan. It sounds like the surgery helped him immediately. That is awesome.

      Revatio(sildenafil) is one with fewer side effects for most, I agree. I am grateful that he continues to do well on this and after his PTE surgery.

      Thanks for being so kind. I try to remember as much as possible. Some days, that just isn’t happening-Hehe.

      I hope that you are taking care of yourself this week.

    • #24913
      Cris Dingman
      Participant

      I don’t know if it has already been mentioned, but Patient Assistance Foundation is another group that works with many rare disease medications. The pulmonary hypertension helps always seems to be closed when I look, but many other conditions are listed on the site. Check it out.

    • #24918
      Colleen Steele
      Keymaster

      Thanks @crisincincy! I’m not sure if it was mentioned before but it never hurts to repeat important information such as this. It is appreciated!

    • #24925
      Jen Cueva
      Moderator

      Thanks, @crisincincy, I have heard of that program. I’m guessing that they only have a small budget, or maybe they cannot keep up with requests. I had heard several years ago that they stopped with the copay assistance program for PH. I’m not sure if that’s still the case. You could always email or call them.

      Another is the PAN PROGRAM, , which is for Medicare recipients. A PHriend just told me that she received a visa card to help with costs due to COVID. It is for other essentials besides medications.

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