Rare Disease Advocacy

  • 25,001 supporters taking action on this topic.
  • 9 petitions started in this community.
Start a petition

3 supporters are talking about petitions related to Rare Disease Advocacy!

Dear FDA, Please consider how time sensitive and critical to the wellbeing of millions having even just one gene-agnostic therapy is for Retinitis Pigmentosa sufferers and their families. On behalf of my wife and our baby, please consider this request and take our prayers and best wishes with you. Sincerely hopeful, John Y and family
John supported: Petition to expedite FDA approval of MCO-010 for Retinitis Pigmentosa, a rare disease
As someone with Endosalpingiosis and co-occurring Endometriosis, I have had 4 major surgeries over the course of 10 years and been left in financial ruin from insurance refusing to cover removal of disease despite my GI tract, bowels and an ovary being crushed. My second surgery removed 9 lbs of scar tissue, but Endosalpingiosis was left behind. I had to resort to traveling to India to afford my 3rd surgery in which 4 organs were adhered. The hormone therapy to treat endometriosis symptoms led to further health issues and after 68 days of bleeding heavily and months of risky medication I had a hysterectomy. Insurance covers removal of organs, but not of this rare disease. No treatments are offered and most doctors treat me like a hypochondriac when I say I have Endosalpingiosis, even when showing biopsies. I missed work during monthly flare-ups and before surgery and would disassociate from the extreme pain. Even now, I have monthly flare ups and constant fatigue. Please make a difference in the lives of people struggling with this rare disease.
Angelina supported: Include Endosalpingiosis in the Official Disability List

You’re not alone — a community of supporters is ready to back you.

Start a petition
  1. Home
  2. Topic
  3. Rare Disease Advocacy