Each year, June 1 marks World Hypoparathyroidism Awareness Day, a global event celebrated every year to bring awareness to this rare disease that affects more than 100,000 people (according to the National Organization for Rare Disorders) in the United States.
Hypoparathyroidism may occur after thyroid, parathyroid or other neck surgery where the parathyroid glands are either damaged or removed. When this happens there is either insufficient or no parathyroid hormone available for calcium regulation.
The condition causes lower than normal levels of calcium in the blood due to insufficient levels of parathyroid hormone and can affect individuals of any age. Since calcium is necessary to supply the body with the energy needed for muscle contraction, symptoms of hypoparathyroidism often are related to the dysfunction of muscles and nerves, and also affect a broad range of different organ systems, including kidney, bone, brain, heart and gastrointestinal. Symptoms may include tingling or burning in the fingertips, toes and lip, or muscle aches or cramps in the legs, feet, stomach or face.
For this year’s World Hypoparathyroidism Awareness Day, the HypoPARAthyrodisim Association (HPA) is excited to announce the upcoming launch of the “Patient-Powered Data Platform” — the first of its kind for HPA.
The HPA is working to build this Patient-Powered Data Platform for patients and caregivers of those living with hypoparathyroidism. When someone participates in the Patient-Powered Data Platform, they will help accelerate research and the development of new treatments. Other benefits of participating in the Patient-Powered Data Platform include:
- Informing researchers how hypoparathyroidism impacts patients and changes over time
- Enabling better data to use in drug development and clinical trials
- Giving patients the opportunity to participate in clinical trials
- Reducing the time it takes to study new medicines
- Accelerating the time to get treatments to patients
In rare disease research, gathering data is an essential first step, and an important way for patients and their caregivers to contribute to advancing care for their communities. By having a robust platform of data, HPA will be able to generate more interest from clinicians, researchers and drug developers that they need in order to help progress advancements for hypothyroidism.
“Through the upcoming launch of our Patient-Powered Data Platform, the HPA is continuing to live out its mission of making a world without hypoparathyroidism,” said Deb Murphy, Director of Research and Studies, and former President at HPA. “Everyone at the HPA works tirelessly to bring better awareness and recognition to this condition, and by teaming up with doctors, researchers and specialists, we are confident that the Patient-Powered Data Platform will help bring about new and more treatment options, therefore improving the lives of patients and caregivers.”
To stay updated on the patient-powered data platform and other HPA initiatives please visit: https://hypopara.org/.