INDEX testimonials, snapshots and blogs

From the Editor
The PRP Survival Guide is a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. We need to harvest that knowledge for those in need of enlightenment.

Share what you have learned about PRP as a patient or caregiver. Share what you have been told by your dermatologist? Share articles  you feel might be worth reading or websites worth visiting. Please use “Leave a Reply” at the bottom of this webpage to answer the following question:

Have you ever thought about telling your PRP story?

INDEX testimonials, snapshots and blogs

One Reply to “INDEX testimonials, snapshots and blogs”

  1. I am so happy that many new PRP patients and carers (caregivers in the U.S.) have found their way to this marvellous group!

    As you might know, I am the mother of a 7-year-old happy little girl who has dealt with her PRP for more than 3.5 years (and keeps dealing with it).

    As a long-time member of the PRP Facebook Support Group. I am always very interested in your PRP stories and testimonials. However, I am always frustrated when I realise that I have missed a great story or testimonial hidden among great comments posted toy fellow PRP Facebookers.

    I am also a Co-Moderator of the PRP Communiy on RareConnect. RareConnect is THE place where you can “store” your PRP story. Yes, you have to be member there to post your story. At the moment the stories can be read without being a member but that will be changed soon. If you feel the need, use a nickname to stay anonymous while becoming a member to post your story is always an option.

    As you will see, if you join the community there, many members from the FB group are also members of RaceConnect too. They use the PRP worldwide map and have the opportunity to write down their stories.

    By posting your story on RareConnect, you ensure that other members like me who are interested learning from your experiences are able to read your story any time they find the time to do so.

    Please post your testimonial on https://www.rareconnect.org/en/community/pityriasis-rubra-pilaris. You will help others to learn from your experiences!

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