TAKE ACTION
We're on a mission to speed up research and find a treatment or cure. We need volunteers to help raise awareness about PSSD so the medical community cannot ignore us any longer.
Volunteering has given sufferers a practical approach to living with PSSD. It has helped to reduce feelings of helplessness and feel a sense of empowerment by taking action.
You will be joining a global community who are working hard to make a difference.
Contribute to the awareness movement by sharing your personal PSSD story.
Share a brief but impactful message on the Photo wall! This campaign has been featured on documentaries and news articles. We would appreciate seeing more submissions from those of you who deserve to have your story heard.
Help fund research aimed at uncovering the biological mechanisms of PSSD and identifying potential treatment approaches. The more donations we collect, the faster we can find answers!
PSSD is underreported. If we don’t take initiative to present raw numbers, nobody will help us. Find a list of regulators here to ensure your reaction is reported appropriately. Patient reports can lead to increased warnings, litigation efforts, and are essential for increasing interest.
Contribute to the PSSD awareness movement by speaking out about your experience on X (Twitter). Your account can be anonymous.
Please use the hashtag #PSSD to find the movement!
*Disclaimer: Everyone has the right to share their story, but DO NOT threaten or harass other users on X.*
Our TikTok videos (@pssd_network) are responsible for many PSSD patients finding out they have this condition. Some of the videos have reached almost a million views!
Contribute to the PSSD awareness movement by showing yourself in a video detailing your experience.
Your videos will play a vital role in helping the PSSD Network raise awareness and vividly illustrate the impact of this condition.
- UK Patients only -
UK cabinet members have recommended UK patients to complete feedback reports for Healthwatch. The primary role of Healthwatch is to understand the needs, experiences, and concerns of the public and to ensure these views are heard by decision-makers to improve care. Please consider submitting a report below.
- UK Patients only -
Immense progress has been made to get UK MPs interested in PSSD. Lord Alton from the House of Lords has been advocating for PSSD and stressed the importance of getting as many UK patients as possible to reach out to their MPs.
PRIVACY RIGHTS
We understand the importance of your privacy and will ensure that your personal information is treated with confidentiality and never shared.
If you change your mind after a submission, please contact us to have it removed!